tag:blogger.com,1999:blog-74346622340641698112024-03-14T00:14:04.725-06:00Sue Mayer - Special Needs MomAs a Mom of 3 children, 2 with special needs, I have had the opportunity/privilege to learn/experience with my children how each of them learns differently. My oldest son has introduced me to the joy and challenges of ADHD/Dyslexia/LD in Reading/Writing/Spelling. My daughter allows me to experience a typical child with an exceptional personality. My youngest son has educated me on the many aspects of Down syndrome/Brain Injury/Apraxia/Dysphagia/Bi-Lateral Conductive Hearing Loss.suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.comBlogger209125tag:blogger.com,1999:blog-7434662234064169811.post-14441306560264642332018-04-05T11:32:00.000-06:002018-04-05T11:32:06.643-06:00Sam Smiles ProjectMy writing on the blog had taken a back seat while Sam recovered from his Total Hip Replacement. I also decided to try my hand at writing some children's books and am hoping to find an agent to help me make that dream a reality, and of course, I have jumped into yet another job so I can travel with Sam and begin the process of helping Sam to live independently. Life is crazy...but life is great.<br />
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Sam's total hip replacement was an answer to our prayers. He is 100% mobile, no longer requiring the walker or confinement of the wheel chair. I can't even put into words how my heart feels when I see him race through the house or walk up and down the stairs. I often tear up when a Facebook memory comes up and he is in his body brace or wheelchair and I thank God, Sam's skilled surgeon Dr. Clohisy, and Ozaukee Therapy for where we are today. Never ever take for granted the gift of independent mobility. Each day I wake up and I thank God for allowing me but especially Sam to walk.<br />
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The video posted on Facebook (<a href="https://www.facebook.com/suelmayer/videos/10207949174507697/" target="_blank">link here</a>) right before Sam's surgery absolutely breaks my heart. The amount of pain he was in and how crooked his posture was is just heart breaking. To see him now...walking without pain, easily and not holding his breath, smiling and laughing does all of our hearts good!<br />
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Sam is happily doing chores around the house again, getting the mail, taking out the garbage and recycling container, laundry, dishes... Sam has returned to work at J & H Heating where he puts together installation kits, sorts parts, takes care of the garbage and recyclables from the office and does contract work for a local hardware distributor. <br />
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I have always wanted all of my children to experience and enjoy volunteering. Sam was a little more challenging to find the right fit but he is now enjoying his own opportunity to give back to the community. We started Sam Smiles Project in February. Sam collects product and monetary donations to assemble hygiene packs for the homeless. All his packs and proceeds go directly to Mr. <a href="https://mrbobsunderthebridge.org/" target="_blank">Bob's Under the Bridge</a>, a 501c3 organization in Cedarburg. Mr. Bob's distributes about 125 hygiene packs a week to the homeless in Milwaukee and the surrounding area. We started our goal at raising $1,000 and in 12 days Sam accomplished that goal through his Go Fund Me page, which can be found here: <a href="https://www.gofundme.com/sam-smiles-project" target="_blank">Sam Smiles Project</a>. We keep all of Sam's donors up to date on his Sam Smiles Facebook page which can be found here: <a href="https://www.facebook.com/SamSmilesProject/" target="_blank">Sam Smiles Facebook</a>. This project is truly a win/win, Sam gets to work on his skill sets of organizing and assembling the hygiene kits. He also uses his own money at the Dollar Tree store to purchase special additions to his kits, like granola bars, cookies or candy. He restocks his bins and makes deliveries and pick ups. He also practices his writing on his Thank You cards. And Sam is giving back and helping the homeless in Milwaukee.<br />
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Sam has become a wee bit of a celebrity with both a write up in our local newspaper and a TV interview!!<br />
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<a href="http://www.ozaukeepress.com/content/hard-work-beating-challenges" target="_blank">Hard at work beating challenges</a></h1>
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March 21, 2018</div>
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When Sam Mayer was born, doctors said he would never walk, but he has achieved far more than that and is now helping others with his Sam’s Smiles project</div>
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ASSEMBLING HYGIENE PACKS for homeless people, 17-year-old Sam Mayer recently worked on his community service project at his father’s company, J&H Heating in Port Washington. Each of the packs bears a sticker with a smile and Sam’s name on it. Photos by Sam Arendt</div>
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KRISTYN HALBIG ZIEHM</div>
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Ozaukee Press staff</div>
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When you meet Sam Mayer, it’s hard to ignore his wide smile.</div>
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And it’s that grin that has come to define his community service project, Sam’s Smiles. </div>
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Sam collects items for the homeless — everything from snacks to deodorant, soap to shampoo, combs to toothbrushes and toothpaste — then organizes them into hygiene packs at his father Jeff’s company, J&H Heating in Port Washington.</div>
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He delivers them to Mr. Bob’s Under the Bridge program in Cedarburg, which distributes more than 125 packs to homeless people in Milwaukee every week.</div>
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Sam’s Smiles is a dual-purpose charity, not only allowing the 17-year-old Town of Grafton youth the chance to give back to the community but also increase his skill set, his mother Sue said. </div>
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That’s important for Sam, who was born with Down syndrome, has a heart defect and respiratory and immune issues and suffered a serious brain injury when he was less than a month old.</div>
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“We were told he would never walk, never talk,” his mother said. “We were told he would probably have the cognitive ability of an infant.”</div>
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That was news his family didn’t accept. They found an individualized neurodevelopment program that helped Sam surpass those predictions by the time he was 4.</div>
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“Within three weeks in the program, he was belly crawling,” his mother said. “That was my green-light moment.” </div>
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Sam has also faced a number of physical challenges in his short life, hip problems that forced him to be confined to a wheelchair for a time being among the most recent. He had a full hip replacement when he was 15, and now walks without issues.</div>
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“Sam is a warrior, a fighter and through it all he has smiled,” his mother said.</div>
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Sam has met his family’s expectations, and currently holds several jobs. He works for J&H Heating part-time, compiling hardware kits for crews to use when installing rooftop units and doing maintenance chores, and he also does contract work for BDS Fastener in Port.</div>
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“I’m always asking, ‘What else do you have that he can do?’” his mother said. “It keeps his brain going and keeps it interesting for him.”</div>
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From that effort came Sam’s Smiles. </div>
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“It’s a project that has taken on a nice flair,” his mother said.</div>
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Sam uses some of the money he earns working at his part-time jobs, as well as donations from the community, to buy supplies for the hygiene kits.</div>
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His mother recently set up a GoFundMe page to supplement those funds, setting the initial goal at $1,000.</div>
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“I think it was 12 days and we hit our goal,” she said, so they’ve upped the goal to $2,000.</div>
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While some of his supplies are purchased in bulk through MD Supplies, Sam also goes to the Dollar Store to buy some items, selecting them himself and counting out the money at the checkout counter. </div>
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“I want him to learn,” his mother said.</div>
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She posts videos of Sam putting together the kits and making deliveries on the Sam’s Smiles Facebook page, and she and her son send thank yous to donors.</div>
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“It keeps his mind active and keeps him doing something important, something that means something,” his mother said.</div>
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“I’ve always volunteered. I always wanted my children to volunteer. There has to be something you do that’s for others.</div>
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“To see him do all these things as independently as he does is fantastic.”</div>
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Sam is often supervised by his mother and a representative from Balance Inc. is frequently present with Sam on the job. He takes hug breaks and visits with other workers at J&H.</div>
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“He’s been a joy. It’s nice to see him coming to work,” his mother said. “He’s a hard worker.</div>
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“I enjoy my time with him. People say it’s a lot. I say it’s easy. I just have to figure how what makes things work for Sam.”</div>
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And there are many benefits, she added.</div>
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“I have someone who hugs me nine times a day, who tells me he loves me 20 times a day,” his mother said. “Those are our perks.</div>
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“It’s good to see him flourish. I’m thrilled with how far he’s come and what he’s able to do.”</div>
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<em style="background: transparent; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Anyone wishing to donate personal sized items for the hygiene kits may drop them off at J&H Heating, 1220 Mineral Springs Dr., in Port Washington’s industrial park. Visit the Sam’s Smiles Facebook page for more information.</em></div>
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Here is the link to his TV appearance with TaTiana Cash from TMJ4: <a href="https://www.tmj4.com/news/local-news/sam-smiles-project-wisconsin-teen-with-down-syndrome-collects-hygiene-products-for-the-homeless" target="_blank">Click here!</a><br />
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I am very proud of everything that Sam has accomplished. He has come so far since his total hip replacement 1 1/2 years ago. <br />
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The Sam Smiles Project has raised over $3000 and additional product donations.<br />
Sam has delivered to Mr. Bob's Under the Bridge:<br />
24 sets of long underwear<br />
125 hygiene packs<br />
On Friday he will deliver:<br />
75-100 more hygiene packs<br />
168 pair of warm crew socks<br />
72 long sleeve t-shirts<br />
72 pair of insulated gloves<br />
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If Sam inspires you please consider making a donation to the Sam Smiles Project. Monetary donations can be made on the Go Fund Me page or mailed to J & H Heating, 1220 Mineral Springs Drive, Port Washington, WI 53074. Product donations can be sent or dropped off at J & H or if you are local Sam & I would be happy to pick up your donation. Thank you for supporting Sam and helping the homeless, God bless you all!<br />
<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-37387833761791475352016-06-26T11:11:00.000-06:002016-06-26T11:11:10.497-06:00Sam Update...Total Hip Replacement on Wednesday, back home on Thursday but we have a long road of recovery ahead of us.For my family, friends and blog followers who do not have Facebook here are the updates:<br />
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<span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/suelmayer/posts/10206748786418745" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">June 22 at 8:19am</a></span><span aria-hidden="true" role="presentation"> · </span><br />
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We are at the hospital and Sam is currently singing country songs in the waiting room! Current favorites...the ever favorite "Remember When", "Life is a Highway", "That's What I Love About Sunday's" & "The Broken Road"!</div>
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<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a aria-describedby="js_2r" aria-haspopup="true" aria-owns="js_2q" data-hovercard="/ajax/hovercard/user.php?id=1247283742&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/suelmayer?fref=nf" id="js_2s" style="color: #365899; cursor: pointer; text-decoration: none;">Susan L. Mayer</a></span></span></h5>
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<span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/suelmayer/posts/10206750309696826" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">June 22 at 10:32am</a></span><span aria-hidden="true" role="presentation"> · </span><br />
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Sam just went back to surgery. Impressed with how this hospital staff handled Sam and his sensory issues. He had a shot in the arm higher dose but still needed a second shot to get him loopy. They started everything fully dressed with him sitting in a chair. After he was loopy he was transferred to the bed where his IV, medical bracelets were put on and clothes were removed. Sam's only constant statement "I want to go home."</div>
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<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a data-hovercard="/ajax/hovercard/user.php?id=1247283742&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/suelmayer?fref=nf" style="color: #365899; cursor: pointer; text-decoration: none;">Susan L. Mayer</a></span></span></h5>
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<span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/suelmayer/posts/10206751121317116" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">June 22 at 1:14pm</a></span><span aria-hidden="true" role="presentation"> · </span><br />
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<a aria-expanded="false" aria-haspopup="true" class="_42ft _4jy0 _55pi _5vto _55_p _2agf _p _1zg8 _3m8n _4jy3 _517h _51sy _59pe" data-hover="tooltip" data-testid="privacy_selector_10206751121317116" data-tooltip-alignh="right" data-tooltip-content="Your friends" href="https://www.facebook.com/suelmayer?fref=ts#" id="u_jsonp_5_p" rel="toggle" role="button" style="-webkit-font-smoothing: antialiased; background: none; border-radius: 2px; border: 1px solid transparent; box-sizing: content-box; color: #4267b2; cursor: pointer; display: block; font-weight: bold; line-height: 22px; max-width: 26px; padding: 0px 3px; position: relative; text-align: center; text-decoration: none; vertical-align: middle; white-space: nowrap; word-wrap: normal;"><span class="_55pe" style="color: #999999; display: inline-block; max-width: 12px; overflow: hidden; text-overflow: ellipsis; vertical-align: top;"><i class="mrs img sp_gSMlvl-CJam sx_b82258" style="background-image: url("/rsrc.php/v2/yb/r/9QWGsMF_2be.png"); background-position: -48px -90px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 12px; margin-right: 5px; position: relative; vertical-align: middle; width: 12px;"></i></span><i class="_3-99 img sp_diRkHIvNwB6 sx_52e434" style="background-image: url("/rsrc.php/v2/yM/r/sJ0cIlWgoTn.png"); background-position: -133px -196px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 8px; margin-left: 4px; position: relative; vertical-align: middle; width: 9px;"></i></a></div>
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Sam's surgery is done. Dr. Clohisy said that surgery went very well, complicated due to Sam's pelvic deformity and the deformity of the femur but he feels the new hip is very stable and has a lot more movement than he had previously. They are closing the incision now and he will be moved to recovery. Hallelujah!</div>
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<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a aria-describedby="js_2r" aria-haspopup="true" aria-owns="js_2q" data-hovercard="/ajax/hovercard/user.php?id=1247283742&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/suelmayer?fref=nf" id="js_2x" style="color: #365899; cursor: pointer;">Susan L. Mayer</a></span></span></h5>
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<span class="fsm fwn fcg"><a class="_5pcq" href="https://www.facebook.com/suelmayer/posts/10206753511176861" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">June 22 at 9:32pm</a></span><span aria-hidden="true" role="presentation"> · </span><br />
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<a aria-expanded="false" aria-haspopup="true" class="_42ft _4jy0 _55pi _5vto _55_p _2agf _p _1zg8 _3m8n _4jy3 _517h _51sy _59pe" data-hover="tooltip" data-testid="privacy_selector_10206753511176861" data-tooltip-alignh="right" data-tooltip-content="Your friends" href="https://www.facebook.com/suelmayer?fref=ts#" id="u_jsonp_5_l" rel="toggle" role="button" style="-webkit-font-smoothing: antialiased; background: none; border-radius: 2px; border: 1px solid transparent; box-sizing: content-box; color: #4267b2; cursor: pointer; display: block; font-weight: bold; line-height: 22px; max-width: 26px; padding: 0px 3px; position: relative; text-align: center; text-decoration: none; vertical-align: middle; white-space: nowrap; word-wrap: normal;"><span class="_55pe" style="color: #999999; display: inline-block; max-width: 12px; overflow: hidden; text-overflow: ellipsis; vertical-align: top;"><i class="mrs img sp_gSMlvl-CJam sx_b82258" style="background-image: url("/rsrc.php/v2/yb/r/9QWGsMF_2be.png"); background-position: -48px -90px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 12px; margin-right: 5px; position: relative; vertical-align: middle; width: 12px;"></i></span><i class="_3-99 img sp_diRkHIvNwB6 sx_52e434" style="background-image: url("/rsrc.php/v2/yM/r/sJ0cIlWgoTn.png"); background-position: -133px -196px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 8px; margin-left: 4px; position: relative; vertical-align: middle; width: 9px;"></i></a></div>
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Sam just stood up, took a couple steps and sat in a chair. He is determined to go home! Now my little warrior is enjoying some ice cream!</div>
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<h5 class="_5pbw" data-ft="{"tn":"C"}" id="js_1m" style="font-size: 14px; font-weight: normal; line-height: 1.38; margin: 0px 0px 2px; overflow: hidden; padding: 0px 22px 0px 0px;">
<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a data-hovercard="/ajax/hovercard/user.php?id=1247283742&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/suelmayer?fref=nf" style="color: #365899; cursor: pointer; text-decoration: none;">Susan L. Mayer</a></span></span></h5>
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<span class="fsm fwn fcg"><a ajaxify="https://www.facebook.com/photo.php?fbid=10206757313511917&set=a.10202484329449986.1073741827.1247283742&type=3&size=720%2C960&source=12&player_origin=profile" class="_5pcq" href="https://www.facebook.com/photo.php?fbid=10206757313511917&set=a.10202484329449986.1073741827.1247283742&type=3" rel="theater" style="color: #90949c; cursor: pointer;" target=""><abbr class="_5ptz" data-shorten="1" data-utime="1466696488" style="border-bottom-style: none; text-decoration: none;" title="Thursday, June 23, 2016 at 8:41am">June 23 at 8:41am</abbr></a></span><span aria-hidden="true" role="presentation"> · </span><br />
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<a aria-expanded="false" aria-haspopup="true" aria-owns="u_1o_0" class="_42ft _4jy0 _55pi _5vto _55_p _2agf _p _1zg8 _3m8n _4jy3 _517h _51sy _59pe" data-hover="tooltip" data-testid="privacy_selector_10206757317152008" data-tooltip-alignh="right" data-tooltip-content="Your friends" href="https://www.facebook.com/suelmayer?fref=ts#" id="u_jsonp_5_t" rel="toggle" role="button" style="-webkit-font-smoothing: antialiased; background: none; border-radius: 2px; border: 1px solid transparent; box-sizing: content-box; color: #4267b2; cursor: pointer; display: block; font-weight: bold; line-height: 22px; max-width: 26px; padding: 0px 3px; position: relative; text-align: center; text-decoration: none; vertical-align: middle; white-space: nowrap; word-wrap: normal;"><span class="_55pe" style="color: #999999; display: inline-block; max-width: 12px; overflow: hidden; text-overflow: ellipsis; vertical-align: top;"><i class="mrs img sp_gSMlvl-CJam sx_b82258" style="background-image: url("/rsrc.php/v2/yb/r/9QWGsMF_2be.png"); background-position: -48px -90px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 12px; margin-right: 5px; position: relative; vertical-align: middle; width: 12px;"></i></span><i class="_3-99 img sp_diRkHIvNwB6 sx_52e434" style="background-image: url("/rsrc.php/v2/yM/r/sJ0cIlWgoTn.png"); background-position: -133px -196px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 8px; margin-left: 4px; position: relative; vertical-align: middle; width: 9px;"></i></a></div>
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There is talk about Sam going home today!!!!</div>
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<span class="fwn fcg" style="color: #90949c;"><span class="fwb fcg" data-ft="{"tn":";"}" style="font-weight: bold;"><a aria-describedby="js_33" aria-haspopup="true" aria-owns="js_32" data-hovercard="/ajax/hovercard/user.php?id=1247283742&extragetparams=%7B%22fref%22%3A%22nf%22%7D" href="https://www.facebook.com/suelmayer?fref=nf" id="js_34" style="color: #365899; cursor: pointer;">Susan L. Mayer</a></span></span></h5>
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<span class="fsm fwn fcg"><a ajaxify="https://www.facebook.com/photo.php?fbid=10206759683571167&set=a.10202484329449986.1073741827.1247283742&type=3&size=960%2C720&source=12&player_origin=profile" class="_5pcq" href="https://www.facebook.com/photo.php?fbid=10206759683571167&set=a.10202484329449986.1073741827.1247283742&type=3" rel="theater" style="color: #90949c; cursor: pointer; text-decoration: none;" target="">June 23 at 3:10pm</a></span><span aria-hidden="true" role="presentation"> · </span><br />
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<a aria-expanded="false" aria-haspopup="true" class="_42ft _4jy0 _55pi _5vto _55_p _2agf _p _1zg8 _3m8n _4jy3 _517h _51sy _59pe" data-hover="tooltip" data-testid="privacy_selector_10206759685171207" data-tooltip-alignh="right" data-tooltip-content="Your friends" href="https://www.facebook.com/suelmayer?fref=ts#" id="u_jsonp_4_t" rel="toggle" role="button" style="-webkit-font-smoothing: antialiased; background: none; border-radius: 2px; border: 1px solid transparent; box-sizing: content-box; color: #4267b2; cursor: pointer; display: block; font-weight: bold; line-height: 22px; max-width: 26px; padding: 0px 3px; position: relative; text-align: center; text-decoration: none; vertical-align: middle; white-space: nowrap; word-wrap: normal;"><span class="_55pe" style="color: #999999; display: inline-block; max-width: 12px; overflow: hidden; text-overflow: ellipsis; vertical-align: top;"><i class="mrs img sp_gSMlvl-CJam sx_b82258" style="background-image: url("/rsrc.php/v2/yb/r/9QWGsMF_2be.png"); background-position: -48px -90px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 12px; margin-right: 5px; position: relative; vertical-align: middle; width: 12px;"></i></span><i class="_3-99 img sp_diRkHIvNwB6 sx_52e434" style="background-image: url("/rsrc.php/v2/yM/r/sJ0cIlWgoTn.png"); background-position: -133px -196px; background-repeat: no-repeat; background-size: auto; bottom: 1px; display: inline-block; height: 8px; margin-left: 4px; position: relative; vertical-align: middle; width: 9px;"></i></a></div>
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We are headed home! This kid is a ROCKSTAR!</div>
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Sam is soooo happy to be home! He has been up and walking twice today. We want to thank all of you for your prayers, please know they have indeed been answered. We have insured brace compliance with a little duct tape but overall he is being a wonderful patient. Extra thanks to Aunt Julie, Faron & Eli for the Megaphone which he has mastered the use of, although I can hear the continuous "Mom, Sue...come here now!" pretty well without it!</div>
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Here is Sam, day 2 after surgery amazing me some more! I was amazed to see him stand without assistance and walk back to his bedroom. He is such a warrior and did all of this with minimal Sam grumbling. Wow! Simply WOW!</div>
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He still requires consistent pain medication and anti inflammatories and doesn't like me to be too far away for any need he may have but he is handling this very well. He is compliant on exercises and breathing treatments, no fever, great color and clear sounding lungs! I am thankful and counting our blessings!</div>
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A little balloon badminton to help keep him entertained out of bed but I think it was more of a quest to hit Buddy with the balloon! LOL <i class="_3kkw _4-k1" style="background-image: url("https://www.facebook.com/images/emoji.php/v5/u7f/1/16/1f60a.png"); background-size: 16px 16px; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"><span class="accessible_elem" style="clip: rect(1px 1px 1px 1px); height: 1px; overflow: hidden; position: absolute; white-space: nowrap; width: 1px;">😊</span></i></div>
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A fresh squeaky clean Sam! He wasn't too happy about the sponge bath but he sure looks cute afterward! I had to remove the duct tape to open the brace and tuck his shirt in. Sam knows his sensory issues really pick up when he has pain so he asked to have the tape put back on...smart boy! Time for lunch, some pain medication and a nap. The nurse should be coming to draw blood and remove the dressing to check the surgical site. I may need some pain medication to get through that. </div>
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The home nurse came in to check on Sam's incision. Sam's incision is closed with Prineo (a clear liquid sealant and mesh) that will remain on the incision for 21 days. All looked good. Still sponge bathing until I can spend some time with OT & PT to devise a good shower plan. Anytime Sam is without his brace is a huge risk of dislocation while he is healing.</div>
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Last night Sam began to run a fever, highest point was 101. Sam's pain medication contains acetaminophen so that addres<span class="text_exposed_show" style="display: inline;">ses pain and fever. Thankfully his fever has gone down and I will keep a close eye on him today. He is a little crankier than usual, deciding to rip a hole in his shirt and yell a little louder than normal. The spitting behavior and complaining about his mouth has returned which may be an indication that the GERD is increasing so I will add some enzymes to help with digestion. I was hoping we would just keep moving forward with no setbacks, but I know that with Sam being Sam he will keep me on my toes. Praying for bucket loads of patience to deal with behavior issues, guidance to deal with the setbacks and faith that we will get through one day at a time in Sam's way and at his pace.</span></div>
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com10tag:blogger.com,1999:blog-7434662234064169811.post-48574205075419119732016-06-20T22:28:00.002-06:002016-06-20T22:28:48.652-06:00Finding Time To WriteMy blog posts seem to get further and further apart, not for lack of interesting things to post about but instead it is about taking the time to stop, collect my thoughts and write. I have always said that my writing in this blog is my therapy and I could use a little therapy right now.<br />
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We are headed to St. Louis tomorrow for Sam's Total Hip Replacement surgery. He will be fitted for the post surgery brace and then we will head to Barnes Noble on Wednesday morning for the surgery. This could potentially be a huge turning point in Sam's mobility. This is our last chance at helping him regain full mobility and correcting his leg length issue...and I have put my trust in God and Sam's surgeon that this will work! Sam will walk without assistance again and his road to independence will take another turn toward meeting his goals.<br />
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It is never easy for me to put Sam into the hands of a surgeon or an anesthesiologist but what this surgery could do to improve Sam's quality of life is pushing us along. Sam and I have talked about the surgery and Sam continues to state that his hip is all better, even as he puts himself in traction or rubs his knee. My thoughts are very jumbled as they are every time I make serious medical decisions for Sam but I strive to keep moving forward, taking one day at a time, enjoying the present and giving my worry and anxiety to God. I have been doing everything I can to get Sam as healthy as possible for this surgery. We have been juicing, using the Vest Clearance System and other respiratory therapy, increasing his arm strength and praying together...alot.<br />
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Sam is drifting off to sleep as I type and the sound of the keyboard is bothering him so I will sign off. Please keep my little warrior in your prayers. I'm praying for his surgeon, anesthesiologist, medical staff, and most of all for Sam that his respiratory system stays stable, his pain be manageable and his outcome be extraordinary. God bless all of you!<br />
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<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-11829803270678461572015-07-29T09:32:00.002-06:002015-07-29T09:32:55.082-06:00A Very Overdue Update!!Hello Blog followers. I know you are wondering, what happened? Where did she go? No updates for months? Is Sam okay??<br />
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In the last couple of years, we have had our share of challenges to physical being and spirit...but I think, I hope we are on the comeback trail and we are embarking on a very exciting time. I have also noticed a whole new group of blog followers and I welcome you and will provide a little history so you can get caught up or you can grab a really big cup of coffee and keep hitting the older posts button until you know Sam's story inside and out.<br />
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First and foremost Sam is amazing!! Sam will turn 15 this year, where did the time go?? When Sam entered this world weighing an astounding 10 lbs. 2 oz. and with a surprise diagnosis of Down syndrome Jeff and I had no idea of the journey we were about to take on. We quickly learned that Sam had respiratory, immune and feeding issues. Sam's first month was filled with doctor appointments and hospitalizations for illness. During one of those hospitalizations we were moved to the ICU when Sam stopped breathing on numerous occasions and we were told that he had suffered a brain injury from oxygen deprivation that would effect his right side and forever change our world. We were told he may not walk or talk, he would have the cognitive ability of an infant, he might never be potty trained or may have some success at a later age and if the respiratory and feeding issues continued a trach, feeding tube and midface extension may be necessary. Sam also had an ASD heart defect. It was a lot to take in and process as you looked into the eyes of your beautiful baby boy, it was more than this Mama's heart could fathom...but part of me was angry. How could they predict what this one month old was going to be able to accomplish in his life?? We hadn't even started working with him, where did they get their glass ball that could predict his future? Where was the hope and faith that God would see us through??<br />
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Having a background in Marketing I began to research and I found a letter written by Bob Doman to the parents of children with Down syndrome, A Down Syndrome - Perspectives - A message to parents of Down Syndrome Children”, Journal of The NACD Foundation, 2000, Volume 13, No. 1. Bob used words like "unlimited potential" and I became interested because no one was using that terminology when they talked about Sam.<br />
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We started with NACD when Sam was 18 months old and we are still with them today. I wish I could say that Sam's journey got easier with NACD but with Sam being Sam, he threw in a lot of curve balls. Sam's feeding issues became dysphagia, a late swallow (probably associated with the brain injury) which required us to thicken liquids. After repeated swallow studies Sam finally proved he could bring his tongue back, close his mouth and not lose an airway which eliminated the need for midface extension and delayed talk on a trach or feeding tube.<br />
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Sam's ASD closed on it's own right before his scheduled open heart surgery at 3 years old. Hallelujah, but Sam's list of challenges continued. Due to Sam's brain injury we had additional delays in speech and crawling/walking. Sam did begin to walk at the age of 3 1/2 years old and actually at that age we had surpassed with NACD's help all of what was predicted that Sam would accomplish in his life time. He was speaking some words, he could read and proved his reading ability by handing words to us that we asked for. He was walking and he was beginning to get better control of his right side. He was fully potty trained even through the night by the age of 2. He still had a crooked smile which he continues to have to this day but the prediction of where he would get to had been shattered and the idea of unlimited potential was feasible again.<br />
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Sam's speech was still very delayed and after having tubes put in his ears to eliminate any chance of fluid, fighting for a fair hearing evaluation and jumping through insurance hoops Sam was diagnosed with bi-lateral conductive hearing loss and received a BAHA bone conduction hearing aid. Due to Sam's extensive sensory issues (probably also brain injury related) we had the hearing aid secured to a baseball hat and Ellen Doman promised me that if he could hear he would wear it...and she was right. Sam's speech began to finally develop at the age of 7 and we began to hear clearer speech, less non speech sounds and some grouping of words. Sam's early reading success helped us work on his speech and he quickly learned chunked phrases, like "I want (fill in blank) please" and other phrases. Sam was also diagnosed with apraxia and aphasia and speech processing continues to be his biggest delay.<br />
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Sam's immune system and respiratory issues continued to challenge us and we made the decision to homeschool Sam after frequent hospital admissions due to attending public school. I didn't want to homeschool but I did want to protect Sam's health and I knew he wasn't learning much when he was sick all the time. I was often reassured that Sam would grow out of his respiratory issues and although over the years we have had less hospitalizations we still struggle to keep Sam healthy in winter. We have had good winters and bad, this last winter was one of the toughest in a long time. Sam got sick with the H1N1 virus that was sweeping the country and causing children to be hospitalized with quite a few deaths occurring. Sam got sick in August and continued to piggy back illnesses for 120+ days of winter. His body became stressed from so much illness and he began to have auto immune reactions the worst being a severe acid reflux. The acid reflux medication caused mouth ulcers and Sam lost 20+ lbs. before we were able to get him stable again. Sam does not react well to pharmaceuticals so the addition of an oscillating vest like those used for people with Cystic Fibrosis and the use of natural supplements has been helpful.<br />
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About the time we had Sam walking, running and going up and down steps in a beautiful cross pattern along with swimming laps and learning how to ride his bike we were hit with yet another challenge. At age 9 Sam began to limp and after x-rays and numerous consults we were told Sam had hip dysplasia and Perthes in his left hip. Yep, that took the wind out of our sails again as we learned that this diagnosis would require multiple surgeries, a body brace for 7 weeks and one year of rehab. After Sam's first surgery he began his rehab but suddenly stopped walking and refused to even transfer without narcotic pain medication. The first surgery helped with the containment of the hip but he had no range of movement. We travelled to Baltimore to seek further assistance with a Perthes specialist and after a lot of prayer we decided to have an external fixator put on Sam's left hip for 4 months and continue rehab to see how much ROM Sam could regain. The external fixator is a force to be reckoned with, it is a halo device that is external but pins go through the skin, muscle and bone in the hip and thigh to allow the hip to pull apart and reform in hopefully a better configuration. 4 months of daily pin care, exercises/stretches and trying to encourage Sam to move with this device hanging off his hip. The surgery was successful to allow Sam movement again. He is no longer using pain medication and can walk independently for short distances, does better using a walker for working his way throughout the house or short distances outside the home and uses the wheel chair for longer distances. Sam still has a significant leg length discrepancy and his ROM is still limited but for right now he can get around. The next step will be a total hip replacement or hip fusion.<br />
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Within a year's time Sam lost both of his grandfathers and his grandmother who was like his second mom. Sam and my Mom were a team, they loved and enjoyed each other and my Mom helped keep me sane as we went through the challenges of Sam's journey. She was my rock!! I miss them all more than I can ever express, but I know they would want me to push on.<br />
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So push on...we did. When Sam was 9, before hip dysplasia and Perthes we did a Path Planning session at his birthday party.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifGz7wPo6ORCTgETPdTcskKxvTuvFblkxzyjJF720RuGQ3A5oTvsBhZeO-Dyz35mVIZMK2DHBzlo5SDQ1iy8gjx0XAcp4tcyiDyeJTZEy0PjIcfDGYEXpODOuUqhBBo228n9ndotvcTTM/s1600/Sam+9+yr+birthday+path+picture.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifGz7wPo6ORCTgETPdTcskKxvTuvFblkxzyjJF720RuGQ3A5oTvsBhZeO-Dyz35mVIZMK2DHBzlo5SDQ1iy8gjx0XAcp4tcyiDyeJTZEy0PjIcfDGYEXpODOuUqhBBo228n9ndotvcTTM/s400/Sam+9+yr+birthday+path+picture.jpg" width="237" /></a></div>
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PATH is a person centered planning approach. It builds community around the person with special needs. Eventhough Sam was just 9 we wanted to get the family together to begin the process of thinking about Sam's future. We wanted everybody to help us think and brainstorm on what our hopes and dreams are for Sam's life. We have all heard the quotation "It takes a community to raise a child", in the case of special needs children this couldn't be more true. PATH is an 8 step process that begins with "The Dream". When Sam was born with Down syndrome we quickly put aside our hopes and dreams as we came to terms with his diagnosis. When he later suffered a brain injury it seemed those dreams were buried under a multiple medical diagnosis that was very bleak. Add in hearing loss, apraxia and aphasia and it was getting harder and harder to dream. Here is Sam's Dream step of the process.<br />
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Our dreams centered on Sam being happy and healthy. We thought about him living independently and what that might look like. Working at J&H or taking care of the apartment buildings. Driving or using transportation to get around, Special Olympics, friends, team sports, music, traveling, volunteering at church, jet skiing, college, swimming and a even a girl friend. We dreamed of an active, involved, fulfilling life for Sam.<br />
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We knew these dreams would change and develop over time and Sam would decide what he wanted or didn't want to do. We had hope...again!<br />
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Since this planning Sam was diagnosed with hip dysplasia and Perthes which would further change the plans but we weren't giving up. Hmmm...that is the key...never giving up, no matter what life throws at you.<br />
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So, now Sam is going to be 15 years old in December and where are we at? <br />
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This year Sam began to volunteer for Horizon Hospice the organization that worked with us as my Dad went through the hospice process. Sam is a flower arranger and he and I work as a team. We go to Trader Joe's every Wednesday morning to pick up the flowers they discard. We drive back to the Horizon Hospice offices, unload and take the bouquets apart, throwing out the bad flowers and making new arrangements with the good flowers for the patients and their families. Sam helps me with the pick up, taking the bouquets apart, filling the containers with water, clipping the stems and delivering the flowers to the nurse/chaplain pick up area.<br />
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Sam participated in Special Olympics swimming until his second and third hip surgery. Now he swims to rehab and stretch his hip instead of competing.<br />
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This summer Sam began to work at J&H Heating two days a week for a few hours each time. His job coach from Balance Inc. takes him and works with him to learn and complete his job. Each time he is paid after he finishes and is allowed to spend his money on something he would like. Right now Sam is pretty interested in food and will order a salad each time he gets paid but we hope to expand his choices. The service and installation techs at J&H often fill buckets with miscellaneous parts from the jobs they are working on. Sam receives those buckets and sorts the various PVC pieces, fittings, screws and miscellaneous brackets so that they can be put back into the service department inventory. We will expand his job to include cleaning the office and helping to wash and maintain the company's fleet of trucks. <br />
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Sam is still homeschooled so I continue to work with him on reading, writing, math and learning about things that interest him. I am also finishing up his catechism lessons so that by next year he can get confirmed and begin doing some volunteering at our church. Sam gets together with friends and he is currently attending the summer recreation program sponsored by our Balance program for the month of July each week day afternoon. After he completes that we will be headed on a road trip to Michigan for a train ride into Canada, sight seeing, swimming, bon fires and having fun.<br />
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But we aren't stopping there...in fact, we are just getting started. Another area we need to focus on is independent living. Yep, that is a scary one and probably the most difficult to embark on. When we originally did Sam's Path Planning we brainstormed that he would live in an apartment with another person with a physical disability or a shared housing situation. Over the years I have watched Sam choose to become more independent and I have also watched him work caregivers to do the things he can do on his own. I began to show Sam pictures of small homes and always asked him the same question. "Sam, could you see yourself living here?" He would usually look through the photographs and then turn to me and say "No, Sam stay home." I wasn't sure if he didn't think he could do it or what might be holding him back. One evening as I was browsing pictures of small homes I came across one that caught my attention. I began to research further and found pictures of this unique little home that was set in a wooded area, just like the back portion of our lot. As I read more I learned it was manufactured in Wisconsin and it arrived fully furnished in two pieces, that would be really convenient. I printed out the pictures and showed them to Sam. He looked through them once, twice and then a third time. He broke into a big crooked smile and said "Uh Mama...that's Sam's house!"<br />
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You could have knocked me over with a feather. Each and every time Sam sees the pictures he lets me know it is his house. I began to think about how much Sam could learn and experience with the simple separation of our house from his but still having the benefit of being close by, keeping him safe. I presented the idea to Jeff who like me was now dreaming of the possibility and how beneficial it would be for Sam. Our worries and concerns are the same but we continue to plan and move forward. Even if Sam did not choose to live in the house long term, we could sell it and move it and the experience he would have gained will carry over to any living situation he may choose. This house opens up a whole new world to Sam. I presented the idea to Ellen Doman our NACD evaluator and she loved it. I asked the question that I knew she could answer better than anyone, "Can he do it Ellen?" Her answer "150% YES!" We have a lot of work, planning and research ahead of us. Here is the house Sam has decided is his house.<br />
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The house from outside.<br />
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The screenporch.</div>
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Going into the living area.</div>
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The living/kitchen area.</div>
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The bedroom and bathroom.</div>
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Our NACD programs now focus around independence and building a daily life for Sam. So much to think about so much I could worry about but I am going to keep moving forward, one day at a time, one step at a time. <br />
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I know Jeff is a visual kind of guy so I knew he would want to see it in person. This weekend for our anniversary I am surprising Jeff with a stay in this very home on a resort called Canoe Bay in Chetek WI. This way he will be able to see it, experience it, ask questions and get comfortable with it. We also plan to go on a fishing trip, enjoy a tour of the resort's gardens (since the deer ate Jeff's garden) and enjoy some hiking and relaxing together.<br />
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I will be setting up meetings to figure out funding, how our state funds work when Sam becomes an adult, what services and help is provided. I will be researching nanny cams, security systems, a service dog, remote lock refrigerator (Hee Hee, on my wish list), a communication system between our house and Sam's, convection cooktops....and the list goes on and on.<br />
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Each day I look at Sam differently. I am changing my home, my schedule and everything we do to work towards his independence goal. Some days I am good and other days the reality of all of it catches up with me, so I read over a post I wrote during one of my more challenging days to keep me moving forward and to keep dreaming.<br />
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"Deep breath...I will allow Sam to make mistakes in order to learn, grow, experience and achieve independence. I will step away so he can move forward. I will love and listen but not take over and further disable. I will stop re-teaching and start expecting...MORE...compliance, understanding and achievement. I will not give up, give in or accept defeat...we will fight, we will problem solve, we will work together to move forward sometimes by our own strength and gumption...but always, in all ways through faith & hope. I have watched him physically grow and now will celebrate as he figures our exactly who he is, what he wants, how he needs to think, do, interact and succeed in his life, in his way. I knew all of this raising Ben & Danielle but Sam has always asked more of me, required more from me. He asks me to feel more, to love more and he changed my every thought and outlook on life and all it entails. I see difference as typical, individuality as a necessity, challenge as growth, love as unconditional and potential as unlimited. Thank you God for giving me Sam who will always teach me more than I will ever teach him! LIVE LIFE GOOD!!"suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com9tag:blogger.com,1999:blog-7434662234064169811.post-43819745629219732262015-04-04T11:49:00.000-06:002015-04-04T11:49:44.116-06:00Taking Chances...And Thinking Outside The Box.My journey with Sam...those four simple words hold so much emotion that it is often hard to give an accurate description. When Sam was diagnosed with Down syndrome I thought it was more than I could handle and then God added a brain injury and respiratory issues, heaped on a helping of hearing loss and speech issues, tossed in a swallowing issue, sensory issues and a weak immune system and then added hip dysplasia and Perthes to what appeared to be more than enough challenges. No where in the Bible does it say God only gives us what we can handle...God gives us way more than we can handle. <br />
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Hmmm...but what God does give us is faith, grace and hope heaped with a big helping of love...and those 4 things make up the glue that holds me together...and sometimes...just barely.<br />
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I remember a blog reader who told me that Sam's Down syndrome and his other challenges were not from God but instead from the Devil and the evil in our world. I believe that God created Sam just the way he wanted Sam to be. If you read the Bible God gave his people both blessings and challenges...life on earth has never been all happiness and rainbows. <br />
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It's funny but I often feel that my journey with Sam is more about the person God would like me to become, lessons I need to learn and Sam is my teacher.<br />
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However...about 3 weeks ago I again found myself questioning God. Sam has had a tough winter with 90+ days of illness, immune & auto immune reactions, pneumonias and his doctors felt that all the stress on his system caused a severe GERD reaction which was causing severe weight loss, pain, behavior issues and making Sam in general...miserable. I had hoped that once we did the scopes and figured out that his issues were being caused by GERD, a simple medication would turn things around. At first it seemed to be working and Sam began to eat again but then the mouth ulcers began to appear and it wasn't just one mouth ulcer, at one point Sam had 3 mouth ulcers at the same time. We all know how much a canker sore can hurt, can you imagine having 3 active ulcers in your mouth. Each day and week Sam seemed to get worse instead of better and my heart broke.<br />
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I decided to visit Sam's naturopathic/holistic doctor in Neenah. We stopped at an Ihop to eat breakfast but the young man that was sitting across from me was only a mere shadow of the Sam I knew and loved. By this point Sam had lost over 30+ pounds, he looked tired, in pain and sad. He did not greet or attempt to talk with anyone including me in the restaurant. He had a blank stare and just kept repeating over and over "My mouth hurts." If he tried to eat he would drool and spit out food. He would repeat that statement every 15 to 20 seconds and I closed my eyes and began to pray. I noticed the people in the booths around us staring at Sam with that look of pity, that look that says "Boy I feel sorry for you and having to put up with that all day and man am I glad my child isn't like that." I know it is probably not what they were thinking but in my mind and how I was feeling...I was sure of it. I wanted to cry...I wanted to scream...I felt alone and frustrated and my heart and soul yearned for the old Sam, the healthy, stable Sam. The Sam that greeted everyone even when I didn't feel like meeting new people, the Sam that does chores and thrives on being independent, the Sam that talks to himself as he works through his day and smiles and laughs and is living, loving and enjoying life. I knew that Sam in his current condition could not travel and would be extremely difficult to have on vacation...and our vacation was only a little more than a week away. I thought if Dr. Vu was unable to help Sam I would have to tell Jeff that Sam and I could not go to Arizona.<br />
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I ate my breakfast as fast as I could and asked the waitress to box up Sam's...and he didn't care...and again my heart broke. As I wheeled him into Dr. Vu's office he again seemed to be stuck on "My mouth hurts." He didn't want to be touched, he didn't want to participate, he couldn't follow a one step instruction, he was angry, he pushed back on his wheelchair every chance he got and he made everything difficult. This was not Sam...this was a child desperately trying to communicate in the only ways he knew how. Yes, I wish he could just tell me what is wrong, I wish he could give me some direction, I wish he would help me help him more...and then I realized he was and God was. In my research the night before I stumbled on The Amish Remedy for acid reflux. I felt the need to go see Dr. Vu and have him muscle test Sam to see what his body needed. The muscle testing was hard to complete with Sam pulling away and being difficult at every opportunity but we persisted. Sam's central nervous system was blocked as soon as we began testing so Dr. Vu had to figure out what was blocking it. Sam's digestive tract was the block and when we began to focus on what the digestive tract needed more things came up, support of his hypothalamus gland, enzymes, immune support... To read and understand all of this appointment please read through my last blog post which covers muscle testing, Standard Process supplements and a different way of communicating with a person that is not able to verbally express what is wrong with them. In that post I explained the process but in this post I want to explain the feelings and what resulted.<br />
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So much with Sam is faith, grace, hope and love. The four things he exudes in every fiber of his soul and that he desperately tries to instill in me. It is always scary to take chances and to think outside the box. When I started my journey with Sam I believed wholeheartedly in so many things. I listened to doctors, therapists and teachers and believed they were the experts on Down syndrome and Sam. I cherished our relationships, learned so much through them and still do but the piece of the puzzle that changed was me and my coming to the realization that I was the expert on Sam and how his many different diagnosis affected him. I no longer just took direction...I researched, asked tons of questions, problem solved and looked for professionals that had that same drive. Sam is an individual and a wonderful one at that...he is not any of his diagnosis...they simply change the way I work or think about things for him.<br />
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As Dr. Vu finished his examination of Sam we talked about the next week and what needed to change in Sam's medical routine. Weaning him from the medication weighed heavily on my mind. I had come to the conclusion we were harming more than helping. Sam has never handled pharmaceuticals well so just changing medications did not seem promising. I decided to believe that I stumbled on the Amish Remedy for a reason and I needed to try it...faith tested again. I hoped the combination of the Amish Remedy and Dr. Vu's new protocol would begin Sam's healing process and allow us to enjoy our vacation. I prayed for the grace to get through this all, quiet my anxiety, sooth my concern and comfort and heal Sam. I knew that no matter what, vacation or no vacation...my love for Sam, Sam's love for me and God's love for both of us would see us through.<br />
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I began giving Sam 2 servings of the Amish Remedy a day, morning and night. This was difficult because putting vinegar on mouth ulcers is not a pleasant reaction, but after a couple of sips it must have reduced the GERD enough for Sam to feel the difference and choose to continue drinking. I brushed Sam's teeth and mouth as much as 7 times a day with <a href="https://heritageessentialoils.com/tooth-suds-plague-defense.php" target="_blank">Tooth Suds</a>. I pumped in 30 capsules and tablets a day with apple sauce (Standard Process supplements and Protandim). I gave him 2 tsp. of colloidal silver a day. I increased Sam's B12 injections to twice a week, injecting him on Wednesdays and Sundays. I offered food and water as much as he was able...and I prayed...a lot.<br />
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Sam's weight stayed above my goal of 110 pounds. Eating and drinking took a long time and much encouragement but slowly I began to see Sam come back. He began to complain about his mouth less and I was able to decrease the brushing to twice a day. He began to eat and drink more and I could ease my concern about dehydration or further weight loss. He began to talk again, to us and to himself as he worked through his day and thoughts. He began to want to go places and after a week or so on the new protocol we travelled to Arizona. Sam followed instructions and he travelled well.<br />
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Here he is enjoying his vacation!!<br />
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Having fun in the pool!!</div>
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Brotherly love!!</div>
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Family!!</div>
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Playing with Dad!!</div>
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Loving on Grandma!!</div>
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Selfies with Mom!!</div>
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Sam at the Brewer Game!!</div>
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Sam having fun with Mitchell!</div>
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Sam still can not be weaned from The Amish Remedy but he is down to once a day. He will be checked again by Dr. Vu next week to see if the supplements need to be changed. GERD still produces minor mouth pain but he has no more mouth ulcers. Taking chances...thinking outside of the box...faith, hope, grace and love and I've got my Sam back! So much to be thankful for this Easter. Wishing all my readers, their children and families a blessed Easter celebration!</div>
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<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-19643981624873677742015-03-13T18:23:00.000-06:002015-03-13T18:23:34.288-06:00The Tough DaysIf I told you that everyday in my journey with Sam is easy...I would be lying...however, everyday in my journey with Sam is precious...that I will always realize and forever be thankful for.<br />
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Sam has had a tough winter and by tough I mean 90+ days of illness, 2 bouts of pneumonia, auto immune reactions, immune reactions, sudden onset of GERD, mouth ulcers, severe weight loss, increase of OCD sensory issues along with daily smiles, giggle fits and some much needed sarcasm on my part to get us through.<br />
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Whew...and I thought the external fixator was going to be the toughest 4 months of my life...it was...this winter is running a close second...hmmm, maybe third after the time spent in the ICU when Sam stopped breathing and suffered his brain injury. The really, really hard part is watching Sam go through so much and not really being sure if we are helping him or hurting him. I realize as a Mom and chief caretaker of Sam that it is my responsibility to watch, analyze, pick up on the small things, research, ask 8 million questions, drive his pediatrician crazy (God love that man), worry (wait not worry...pray instead), scream, cry and sometimes just hold him so close that I hope whatever is bothering him somehow transfers to me and I can deal with it, figure it out and make it go away. When Sam hurts, my heart hurts more and I will do everything in my power to make him feel better.<br />
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Our winter journey began at the end of our road trip to Montana when Sam caught the Enteriovirus 68 that swept across the country and claimed many innocent children's lives. After that virus he never got back to stable, it seemed like he had one virus after the next and when that wasn't enough he threw in some autoimmune reactions and then his body decided to try a different strategy and brought on GERD which led to a couple of pneumonias and a GERD medication that appears to be causing mouth ulcers that required narcotic pain medication but not before we had a full oral examination done under anesthesia so we could rule out a tooth problem. Yep...a whole load of crap and one little guy that still feels terrible, has lost 44 lbs. and just wants the same thing I do...stability. Not sick, not in pain, not unable to eat...just stable.<br />
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I decided to begin to wean Sam from the GERD medication to allow his mouth to heal, unfortunately his GERD symptoms decided to take on a life of their own and today was a very tough day which followed two sleepless nights of trying to deal with Sam's mouth pain issues and the hyperness that results from narcotic pain medication. Oh joy!<br />
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During my late night research I came across a couple of interesting facts about GERD, GERD medication depletes B12 which unfortunately Sam is already depleted on...so I decided to up his B12 injections. GERD can be caused by too much or too little of stomach acid and GERD itself can cause mouth ulcers as well as the medication used to treat GERD. Most nutritionists believe that GERD is caused by bacterial overgrowth. I really liked this article on GERD written by a doctor with a strong viewpoint on nutrition versus medication. <a href="http://www.proteinpower.com/drmike/gerdacid-reflux/gerd-treatment-nutrition-vs-drugs-3/">http://www.proteinpower.com/drmike/gerdacid-reflux/gerd-treatment-nutrition-vs-drugs-3/</a><br />
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So as I headed up to see Dr. Vu I had a couple of thoughts in mind. I can treat bacterial issues with colloidal silver, I can up his B12 injections and I can try adding an organic Amish remedy for acid reflux as I wean Sam from the medication, but how do I get his body to stop over or under producing acid. His diet is the anti inflammation diet and we have already further removed any potential foods that could cause reflux.<br />
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To say Sam was in a mood today...is an understatement of epic proportions. Sam didn't want to see Dr. Vu or any doctor for that matter, Sam's mouth hurt and he was fixated on that and Sam was having congestion issues caused by his GERD symptoms which made him more uncomfortable and Sam was hungry and wanted to eat but his mouth ulcers made that difficult too. Sam fought both Dr. Vu and I through the entire muscle testing segment. For those who don't know Dr. Vu he is <br />
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Vu Nguyen, D.C. and has been working in the Fox Valley area since moving to Neenah, WI in 1998. He received his Doctorate of Chiropractic degree in 1996 from Palmer College of Chiropractic in Davenport, IA. Dr. Vu works to improve his patient's whole health with chiropractic adjustments, physical rehabilitation, nutritional counseling, lifestyle modifications, work modifications and prevention education. He is a Certified Chiropractic Spinal Trauma practitioner and Certified in the Cox Flexion/Distraction technique for low back and radiating leg conditions caused by disc herniations. Dr. Vu will treat the neck with a specific adjustment called the N.U.C.C.A. technique that uses low force and low pressure that does not produce the "cracking" in the neck. Dr. Vu also performs treatments for allergy and sensitivity problems using muscle testing, NAET, Standard Process supplements and without the use of needles or medication. Dr. Vu works with his patient's as much as necessary not to just improve their pain, but improve all aspects of their lives. </div>
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In our world Dr. Vu helps Sam's body communicate what it needs or what it is struggling with when Sam is unable to. He does this through muscle testing, and I know someone is saying "What the heck is muscle testing?" Muscle testing is something you have to experience to really comprehend and yes it is different than anything your traditional doctor will do but it has been unbelievably accurate and helpful in figuring things out for Sam. Here is a video that describes the process:</div>
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Well if you are still with me, you are beginning to think outside the box. Now lets take it one step further and add that when we test Sam, since he will not cooperate with this, Dr. Vu tests through me while I hold on to Sam. Are you freaked out yet?? Sooo...instead of answering all the questions swirling through your mind about what appears to be an unreal way of reading the body I am going to instead tell you what Dr. Vu figured out with Sam today.</div>
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Before I do that I will tell you about a past experience. When Sam had the external fixator on his hip we had issue after issue with pin problems, infection, granulation tissue and Sam's body appearing to fight this thing with all it's might. We had tried antibiotics, manuka honey, different dressings and ointments to no avail, Sam continued to have black flesh, granulation, infection and then Dr. Vu treated Sam for a body/brain imbalance and an issue with Sam's body fighting it's own RNA and miraculously the last month of Sam's external fixator was uneventful and his pin sites looked the best they had during the entire four months.</div>
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Soooo today when Dr. Vu began to test he first checks to see if Sam's nervous system is functioning and his was blocked. He then determines what is blocking it and it was Sam's digestive tract. As he tested further he determined that Sam needed enzymes but more importantly he needed some supplements to help his brain and nervous system to work with his digestive tract, basically his brain wasn't communicating properly with his digestive tract (my mind pictures his brain not getting the message through to produce or not produce stomach acid).</div>
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So, we added these supplements to his protocol:</div>
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Multizyme: Multizyme contains digestive enzymes to support the proper breakdown of proteins, carbohydrates, and fats. </div>
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<li> Enzymes provide support in the gastric and intestinal phases of digestion</li>
<li> Supplemental pancreatic enzymes support pancreatic function</li>
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Hypothalmex: <br />
Before detailing Standard Process Hypothalmex, people have to understand the importance of its impact on the hypothalamus gland. This gland keeps everything running in a smooth way, even while sleeping. Despite its size, this gland is very powerful and can be found beneath the thalamus on both sides of the third ventricle of the brain. In order to be able to keep up with bodily changes, the gland communicates with the other organs in real time. In fact, it actually coordinates blood pressure, electrolyte and fluid balance, body weight that should be kept within normal ranges, depending on the internal and external conditions, as well as body temperature.<br />
In addition, hypothalamus secretes a variety of hormones which are able to control any gland contained by the endocrine system, thus receiving the cue from chemical signals which are sent throughout the organism. These hormones are then released in the bloodstream in proper times and amounts and later stimulate growth of adrenal gland while also promoting protein synthesis every bodily cell.<br />
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Chlorophyll: Chlorophyll Complex supports multiple body systems. <br />
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<li> Provides antioxidant activity</li>
<li> Supports vascular health</li>
<li> Supports the body's normal immune system function</li>
<li> Provides cardiovascular support</li>
<li> Maintains skin and hair health*</li>
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Black Current Seed: Black Currant Seed Oil contains the essential fatty acid gamma-linolenic acid.<br />
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<li> Encourages proper eicosanoid synthesis (central nervous system communication)</li>
<li> Supports the body's normal tissue repair process</li>
<li> Supports normal blood flow</li>
<li> Supports healthy immune system function*</li>
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Cataplex AC: Cataplex A-C helps support immune function and maintains healthy cells and tissues. <br />
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<li> Helps maintain healthy mucous membranes</li>
<li> Supports a healthy immune response</li>
<li> Provides ingredients with antioxidant activity</li>
<li> Supports the hematopoietic system</li>
<li> Helps maintain healthy epithelial and connective tissues</li>
<li> Contains a combination of key ingredients from <a href="https://www.standardprocess.com/Products/Standard-Process/Cataplex-A">Cataplex A</a> and <a href="https://www.standardprocess.com/Products/Standard-Process/Cataplex-C">Cataplex C</a> along with Echinacea</li>
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Symplex M: Symplex M supports the healthy function of the testes and the adrenal, pituitary, and thyroid glands. <br />
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<li> Provides uniquely derived nucleoprotein-mineral extracts that support cellular health</li>
<li> Contains a combination of key ingredients from <a href="https://www.standardprocess.com/Products/Standard-Process/Orchic-PMG">Orchic PMG</a>, <a href="https://www.standardprocess.com/Products/Standard-Process/Drenatrophin-PMG">Drenatrophin PMG</a>, <a href="https://www.standardprocess.com/Products/Standard-Process/Pituitrophin-PMG">Pituitrophin PMG</a>, and <a href="https://www.standardprocess.com/Products/Standard-Process/Thytrophin-PMG">Thytrophin PMG</a>*</li>
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RNA: Ribonucleic Acid (RNA), derived from yeast, supports cell replication, growth, and protein synthesis. <br />
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<li> Promotes healthy cellular growth and development</li>
<li> Supports healthy cellular functioning*</li>
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Our goal is to wean Sam off the GERD medication, by using the Amish Reflux Remedy which includes organic apple cider vinegar, ginger and garlic, all things his body can digest without adverse reactions. Use the supplements to kill the bacteria, support the immune system, improve the central nervous system communication, boost the brain and hypothalmex function, regulate the thyroid and pituitary and help promote healthy cellular function. Use colloidal silver to further kill bacteria and keep the system clean.<br />
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We leave for Arizona in a week or so and I hope and pray, and pray and hope this all works and Sam gets to enjoy his vacation.suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com4tag:blogger.com,1999:blog-7434662234064169811.post-19568987129621446042015-02-24T22:28:00.002-06:002015-02-25T16:35:59.472-06:00Some courage...a whole lotta faith...smothered in love!I've been missing from the blog sphere...regrouping...healing...reflecting and then Sam decided to throw in 90+ days of illness, a couple bouts of pneumonia, some interesting mouth issues, a few autoimmune reactions and well...writing didn't make it to the top of my priority list.<br />
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So what brings me to sit down and post tonight?? Sam is sound asleep at 8:00 pm and I know writing helps me sort things out, my therapy...and I need some of that. Right now...Sam and I are in St. Louis getting a second opinion on his hip and Sam is fighting a virus and recovering from some mouth issues (tongue laceration & a cut in his lower gum) which happened while he was being medicated for a canker sore which may have been caused by a medication for severe acid reflux which may have caused aspiration pneumonia and basically that goes on and on covering the last 6 months. Crazy, challenging, frustrating...so very hard to watch Sam go through so much. Feeling out of control, waiting to see what will hit next, wondering why life has been such a roller coaster and honestly "How the hell do I get off??"<br />
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It would be so easy to get swallowed up in the drama...to just give up. When bad things happen we want to question why?? We can act badly and people would understand...we are going through so much...the stress of our situation and lives can be blamed.<br />
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But then...I look at Sam and how he makes it through each day...and I wake up each morning and read the plaque my best friend gave me before she died "Trust in the Lord with all your heart"...and I think of my Mom and how she showed grace in all she did...and I pull myself up by my boot straps and go on. Not perfectly...not even close...and some days...only by the grace of God do I make it through to the end of the day.<br />
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And I realize that God put all of those people and things and experiences in my life to help me through...to teach me...to encourage me and to understand that my time would be better spent appreciating what I have, who I'm with and remembering to be thankful, to choose to act with grace then to waste my time in negativity, pity or destructive behavior. And sometimes I fail which only shows I'm human...and I hope I learn something from it.<br />
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As Sam and I headed in to see yet another orthopedic surgeon I kept an open mind and a hopeful heart. Sam isn't feeling well but he still managed to smile and talk to the patients waiting in the lobby. He didn't want to be in another doctor's office and he let me know by sitting a few seats away from me but he continued to smile and bargain for ice cream. He cooperated with letting the doctors move his leg to check his ROM and showing them how he walks, but when the x-Rays came up on the screen and we began to talk about his hip he tried to maneuver himself out of the office. I reassured him that he was fine and that he could stay and he countered with another plea for ice cream. He knows when and how to seal the deal.<br />
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We talked about hip fusion and total hip replacement. I voiced my concerns that a hip fusion would not take care of Sam's leg length issue and his limp and twisted gait could possibly cause additional injury to his knees or back after the hip fusion is performed. Dr. Clohisy agreed and we discussed a total hip replacement. I again voiced my concerns about hip dislocation and how low tone contributes to this and people with Down syndrome tend to have low tone. He said the failure rate for a THR in a patient with Down syndrome is 20%, which means there is a 80% success rate. I asked him if Sam were his child what would he be leaning toward. He said first and foremost he wouldn't consider anything until Sam's hip issues warrant taking the next step and that step would be a sedated CT scan and extensive x-rays to assess Sam's hip structure which would help determine if a THR is possible. He does not do many hip fusions in his practice unless it is the only option and would lean toward the THR for Sam to give him the best possible range of motion and to correct his leg length issue at the same time. A hip fusion would mean an extended recovery, including 4 months in a body brace and then rehab to learn to walk again, along with Sam having to learn a new way to sit and realizing and learning to compromise for the limitations imposed by his hip being fused. A total hip replacement would mean two months in a brace but with some mobility and extended rehab to stretch muscles and learn how to walk and move with his new hip. With a 20% chance of failure or dislocation, further surgery or added support to the hip could cause an extended rehab/recovery process. Dr. Clohisy has performed quite a few THR's on patients with Down syndrome with both successes and failures.<br />
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A lot to think about and consider..but for now...Sam and I are going to enjoy our time together...and eat some ice cream. suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com0tag:blogger.com,1999:blog-7434662234064169811.post-45620963577497579632014-06-19T20:08:00.000-06:002014-06-19T20:08:06.312-06:00Sam Mayer Update<div class="separator" style="clear: both; text-align: center;">
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It has been a while since I have had time to blog. For those who are new to the blog, I share my journey with Sam, the good, the bad and the ugly. Sam is 13, he has Down syndrome, a brain injury, aphasia/apraxia, dysphagia, bilateral hearing loss, respiratory/immune issues and at the age of 10 we added hip dysplasia and Perthes. But none of that...all of those labels...describes the amazing little man I spend time with each day and in my eyes he is none of these things...he is just uniquely and perfectly...my Sam. Since his diagnosis of hip dysplasia and Perthes Sam has undergone 3 hip surgeries, including a double osteotomy and an external fixator for 4 months. The first surgery put him in a body brace for 7 weeks, the second was an external fixator (a huge halo device that was externally mounted but went through his skin, muscle and into his bones and required daily pin/medical care.) We have had a heck of a journey and 3 years of rehab. About 3 weeks ago Sam again lost 60% of his mobility. I noticed a change in his gait, his movement decreased and his right leg showed physical signs of weakness...and his right leg is his good leg. His left leg is the one with Perthes and is in a flexed position which causes him to walk on his tip toe on the left side. I have watched Perthes slowly destroy and twist Sam's perfect gait that we worked so hard to achieve after his brain injury had weakened his right side. But Sam and I don't give up...so I began the quest to figure out how to help Sam regain his mobility yet again. I have noticed that as Sam compensates his gait to accommodate his hip, his right ankle is pronating inward severely causing his knee and ankle to be out of alignment and twisting. His altered gait is also twisting his spine and causing his feet to change shape. Sooo...after checking to make sure the hips were stable I decided to work on finding someone who could help shore up his good leg so that we can hold on to his mobility and lack of pain for as long as possible. Sam's final option for his hip is a hip fusion or total hip replacement. Due to Sam's extreme flexibility and low tone he is not even considered a good candidate for a hip replacement. The hip fusion surgery would put him back into a body brace...this time for 4 months.<br />
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Today was one of those days that tested me...what have you learned from your life with Sam??? Sam continues to have mobility issues so upon referral from his pediatrician we went to see our third orthopedic surgeon. To say I dreaded seeing another surgeon would be an understatement. As we sat in the room awaiting his arrival the familiar doubts entered my mind but I pushed them aside and decided that I'm here for a reason, it is always good to get a fresh pair of eyes on a situation...so let's hear what he has to say. I had given the nurse Sam's hip x-rays because in my mind a doctor should know the whole picture, what is happening from head to toe that is causing the issue. I chuckled when she asked me why I had brought a hip x-ray in for a knee/ankle appointment? Hmmmm....could it be because I have always looked at my child as a whole, I don't piece him out, I don't only look at one area at a time but I observe his overall function. This observation is something Sam taught me. Sam doesn't express pain in words...he instead moves differently, moves less, or you notice a change in gait, in his stance, in his expression. You observe his frustration level, his breathing, his....just being. I believe this is a lost art in our medical fields. We think all information can be obtained through questions and speech...not so much with a child that has processing/speech issues. We rush through appointments to get more people in but at the same time as we rush...we miss crucial pieces of the puzzle. In my life with Sam so much is about time. Giving him time to process and answer, giving him time to complete his work/chores, giving him time to practice his speech even if he repeats things over and over and taking time to show him, teach him, talk to him...just be with him. I spend a great deal of my time observing Sam, how he moves, how he breathes, how he understands and I try to incorporate what I learn into how Sam and I interact. Some days...I fail, miserably...but I try to remember that my frustration can't come close to how frustrated Sam must feel when he speaks but people don't understand what he is saying, or he struggles to pull out the right words, or he is unable to convey what he is feeling or thinking, or he hears only a portion of what we say or worse yet when someone underestimates his understanding and ability, spending more time thinking about what he can't do instead of working with him to figure out how he can do it.<br />
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As we waited...Sam, the boy who perceives so much so well...knew I was nervous, knew I was worried how he would react to yet another doctor. He pinched me to get my attention and then proceeded to smile and make a face at me. I smiled and looked away...so he said "Uh Mama" and I turned to him playing with his eyelashes on one side and his finger in his nose on the other. I laughed and said "So you are willing to misbehave to get my attention." He laughed and said "Talk to me." So we talked about the classical music playing which I said was "Bach" and Sam said "No, not bad...pretty." We talked about the picture of the foot on the wall which I said showed the bones and muscles...and Sam quickly showed me his best Hulk Hogan pose. I asked him what he wanted to do when we were done at the doctor, he said "Go home (and smiled)...um McDonalds??...zoo...Daddy work and go to movie." I said "Woah, that's a lot for an afternoon." He said, "Good evening" which I interpreted as meaning we can do some in the evening too because he followed it with a smile and strong nod of his head. By the time the doctor walked in we were both smiling, laughing and ready for whatever might come our way.<br />
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The surgeon shook Sam's hand and I love when a doctor will talk to Sam first and then me. He examined Sam's ankles and knees and watched him walk back and forth. He agreed with my diagnosis and Sam's need for a possible ankle orthotic and knee brace. As he explained that Sam's posture and issues were extremely unique I only smiled...thinking to myself...you have no idea just how unique this little man is. Although he was not able to help me, he suggested another doctor and helped me put the last pieces of my thinking together...sometimes we meet people for the sole purpose of bringing us to the next level of our own problem solving. He confirmed that Sam needs someone who can work closely with him to design and fit him with orthotics and a brace that would fit him perfectly and would give Sam a sense of comfort or stability so that he would want to wear them. Sam is a perfect gauge of if something works or not. He has high sensory issues so he never wore a hat but when he wore a baseball hat with a bone conduction hearing aid on it he found out he could hear and understand better so he continued to wear the hat until his hearing improved and then he promptly handed it back to me after wearing it for 3 years. When we rechecked his hearing both ears had improved to the bottom of the normal range and a hearing aid was no longer needed.<br />
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Soooo....I need the guru of orthotics. Someone who is keen on observation, ready and willing to take on a challenge, thinks outside the box and can fit and alter an orthotic to Sam's twisted form. I need someone who understands movement, non verbal communication and has the patience of a saint. As I talked with the doctor, I had my Sam moment...the surgeon was talking about a doctor from Children's, someone we had seen before...and my mind...well my mind was remembering a conversation with a PT about a fellow PT that was unhappy with standard orthotics and went back to school to develop his own. I thanked the doctor, took the name and number of the doctor from Children's and then promptly called Sam's PT from the parking lot to get the name of the PT who just may be my knight in shining armor. Sam stayed quiet while I left the message and then when I put down my phone said "Okay, all done...about McDonalds???" I said "Sam, thank you for all you have taught me." Sam said "What the heck...over der...I see Culvers" and we both walked into Culvers laughing.<br />
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I love this crazy, tragic, awful, BEAUTIFUL life! Stay tuned for next Tuesday's adventure with the PT and custom orthotic fitting....oh joy!!<br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com5tag:blogger.com,1999:blog-7434662234064169811.post-13609867090510636182014-04-22T23:53:00.001-06:002014-04-22T23:53:32.519-06:00An Overview of NACD and How They Work With Children With Down Syndrome.<span style="font-family: Georgia, "Times New Roman", serif;">Some of my loyal blog readers brought to my attention that I never finished my post on the NACD videos. Well...life happened! Now that life has stabilized a bit...let's get back to that. To view my post on the first 5 videos click on this </span><a href="https://suemayer-specialneedsmom.blogspot.com/b/post-preview?token=gCENjkUBAAA.0CgKVz6IULpyER20ug9SMw.DqZy47JaCSXbUYyH9SZdoA&postId=8987199216264219067&type=POST" target="_blank"><span style="font-family: Georgia, "Times New Roman", serif;">link</span></a><span style="font-family: Georgia, "Times New Roman", serif;">.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">As a refresher to get started on the next six videos here is a little information about NACD.</span> <span style="font-family: Georgia;">In my blog post I often refer to Sam's home program through </span><a href="http://www.nacd.org/"><span style="font-family: Georgia;">NACD</span></a><span style="font-family: Georgia;">, and his evaluator, Ellen Doman. Sam has been on program with NACD since he was 18 months old. I originally found out about NACD as I was researching Down syndrome and brain injury and I came across a letter that Bob Doman (the founder of NACD) had written to parents of Down syndrome children. Bob's letter spoke to me because </span><span style="font-family: Georgia, serif; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">it was the first time I heard anyone say that a child with Down syndrome has an unlimited potential. I often wondered how the medical professionals I had met when Sam was a baby could give me such bleak predictions of his future when we hadn't even tried to work with Sam. As I researched further I appreciated the fact that their programs were individualized to the child and their family si</span><span style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">tuation. I knew early on that Sam was not just dealing with Down syndrome, he also had a brain injury and other medical issues related to his respiratory/immune system and I was already questioning his hearing. I really needed someone to help me with Sam from head to toe. With the help of this amazing organization Sam exceeded the medical professionals opinions by the time he was 3 years old and at that point my husband and I could finally focus on Sam's unlimited potential. </span><br />
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<span style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">In this video Bob talks about speech...whew...this is a big one for Sam. When we think of speech we have to remember the two components, speech and language. Speech is how you articulate and language is what you say. Most children with Down syndrome struggle with language, Sam struggles with speech and language. When looking at speech you have to consider the auditory issues first, in Sam's case a bi-lateral conductive hearing loss was not helping his speech production. He couldn't hear speech sounds well. Structure and function is the next area to consider, this includes jaw placement, pallet size, congestion, size of tonsils, size of tongue, tongue movement, jaw strength, chewing and lip strength. Oh...where do I begin with Sam?? Basically, Sam had issues in all of these areas. Sam's oral cavity was small, Sam's tongue was large (being able to touch your chest with your tongue is not a benefit for speech unfortunately), Sam did not know how to chew and he began life swallowing solids whole (a benefit when it comes to having to learn to swallow tablets, not such a great benefit in preventing choking, aspiration and producing good speech sounds), Sam had a ton of congestion which is why he also had respiratory/immune system issues (removing dairy was the first step), Sam's tonsils took up 70% of his airway uninfected so when he got sick he lost that airway which led to stopping breathing and oxygen deprivation/brain injury. Sam had his tonsils and adenoids removed at 11 months and has had his adenoids shaved two more times. Infants tend to give big ole wet, open-mouth kisses, Sam did this until the age of 4 years old, his lip strength was very weak. Sucking on a straw, a puckered kiss and candle blowing were dreams we had and our NACD program assisted us in all of the areas described.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">The next video deals with motor skills. NACD feels there is a direct correlation between motor skills, cognitive function and efficiency of the central nervous system. I can't express enough how important this area is. Often times children with Down syndrome walk later and therapists don't always follow the developmental steps of tummy crawling, creeping, walking, running and jumping. In Sam's case Down syndrome probably caused low tone and his brain injury caused right side weakness similar to what you would see with a person that has had a stroke and caused a dysfunctional central nervous system. Sam could touch a hot surface and not realize it was hot until he was burned. Sam did not react to cold either. Sam would use his head to help him roll but he didn't try to crawl. Sam could roll over his right arm and never realize it was in a bad position even risking dislocation. We had to start at the very beginning and in Sam's case this meant deep pressure, hot and cold compresses...basically letting the brain know that there was an arm and a leg on the right side and it needed to use them. From there we moved on to tummy time, cross pattern tummy crawling which meant two of us would move Sam's arms and legs for him to help his brain learn the pattern. Then we moved him to an incline surface to help facilitate forward movement with the patterning. Sam had been in 0-3 since he was 6 weeks old and at 18 months he was not tummy crawling, he was not moving beyond his rolling, after two weeks of our NACD program Sam was tummy crawling. The rest of the developmental steps took time as we assisted and strengthened Sam with the right side of his body and at 3 1/2 years old Sam began to walk independently, something we were told he may not be able to ever do. We worked on his gait, his walk, his run and coming up and down stairs. At 5 years Sam had a beautiful cross pattern and could walk, run and go up and down the stairs, however he never learned how to jump. Possibly that was an indication of our future diagnosis of hip dysplasia and Perthes. Those two diagnosis destroyed the beautiful gait we worked so hard to achieve but that foundation has given him a better chance at regaining the mobility he once had.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">The next video deals with social development. This was a major concern of mine in regards to Sam. I struggled with the concept of homeschooling and the perceived lack of socialization. Hmmm...well let me tell you...I was wrong. I had thought that if Sam was in a school environment he would learn to become social by watching the other kids. A few problems with my thinking, Sam had an undiagnosed hearing issue, Sam's global development was that of a 2 year old in a class of 4-5 year olds and Sam had other neurological issues. Let's be Sam for a minute in a classroom setting. A teacher is up front talking of which Sam is only hearing bits and pieces (think of the teacher talking in Charlie Brown), children approach and ask questions that Sam may hear parts of but is unable to process the number of words they are using, when Sam doesn't respond they learn not to talk with him. Sam becomes isolated, unsure of what he is expected to do or how he is to respond...he begins to withdraw, stim more and becomes frustrated, acting out his frustration with negative behavior. Now change to one on one communication with Mom (someone who loves him and isn't going to give up). First I had to enter his world, do things he did so he could see I was interested then we exchanged sounds and I added a speech sound, soon those exchanges became more frequent and the sounds became words. Aphasia and speech issues made this exchange, our communication, a slow and cumbersome task....but I wanted Sam to be social, to communicate. Sam still struggles with back and forth communication but I don't think anyone who meets him would say he isn't social. Sam loves to talk at people, we are working on talking with people...but all in all, not bad progress for a child we were told may never speak due to his brain injury, small oral cavity and large tongue.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">The next video deals with one on one interaction. My life with Sam is based on one on one interaction because when you put Sam in a group he chooses to withdraw, he chooses to limit his frustration by not participating. I often wonder what Sam would be like if I hadn't spent the years I did working with him one on one....was it easy....no....crucial....yes. Sam has spent most of his life being significantly behind his peers including his peers with Down syndrome due to his complicated neurological profile and sheer stubbornness, a very strong family trait, thankfully I was blessed with it too. Sam is the kind of guy that doesn't really work at something unless he wants to or sees a reason to. My son Ben was the same way, the difference...I could reason with Ben, we could talk about it and come to an agreement...not so much with Sam. With Sam's hearing issue, auditory processing level and neurological issues from a brain injury...he needed one on one more than most. As Bob says when you work one on one you alter your approach as needed by how your child reacts...how does a teacher do this in a class of 10, 15, 20 or 30 all indicating very individual and different needs? It is impossible. My thinking with Sam was that we had a lot going on and if I had any hope of reaching him, teaching him, helping him reach a better potential he required good, strong, productive one on one.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">The next video is about educational placement...a thought process I struggled with for years. Considering so much of Sam's life was different than what other people had experienced...our NACD program was intense, Sam had a lot of therapies, doctors and doctor appointments I kinda wished...kinda hoped school was going to be easy. Yeah, not so much. I just wanted the "easy button" in one area and instead my NACD evaluator was trying to convince me that the best placement for Sam would be homeschool. Ummm...not even remotely what I was thinking or wanting or willing to consider. I tried pre-school but Sam was sick more than he was in attendance. NACD's gentle suggestion was becoming a strong plea and I was beginning to listen. I hated our hospital stays and it seemed we were becoming frequent flyers at Children's, a designation without any perks. I kinda thought all the illness and ICU stays were God's way of changing my mind. Soooo...I began to think about homeschooling and I hated the very thought of it but slowly, ever so slowly I was beginning to think outside the box and realize that for Sam with his respiratory/immune, hearing and auditory processing issues...it may be the optimum placement. I took the jump...and it was the best thing I ever did. Now I'm not going to tell you that each and every day I enjoy homeschooling Sam, if I am honest there are days I would pay that little yellow school bus to come and carry him away but in all honesty...this was the best thing for Sam and me (yes, I said me too). Sam returned to school when he was 10 and was placed in a kindergarten class to work on his speech and language, he was very popular since he was the biggest kid in class, but one month in and his diagnosis of hip dysplasia and Perthes came about and I decided it was another sign that Sam should return home. The important thing that Bob stresses is that you need to look at your child as the unique individual that they are and figure out what is the optimum placement. Half days, full days, public, private, typical classroom, special ed. classroom or homeschool and don't be afraid to try different placements. I did and it helped me figure out the right one for Sam. The route I took was not easy and is not for everyone...but it was the right one for Sam.</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">The next video is a discussion of Down syndrome and Autistic tendencies. I agree with what Bob presents in this video but I also have an area that I will agree to disagree. I wholeheartedly believe that any of our children with Down syndrome can have autistic tendencies, low processing which can create a rut where the child gets stuck. Sam was stuck at a 3 in processing for what seemed like FOREVER! His behavior was stimmy and erratic and as a parent it would have been easy to throw in the towel and say "I give up". He was at this level while in school and would often flap, play with his eyelashes, get too close to things and any number of other stimming behaviors when he was bored or lacked any kind of engagement. I'm sure over time he could have been given the label of autistic based on his behavior but Sam had focus when engaged, Sam could stay focused for short periods and he had some social interaction behaviors. I have met other children with Down syndrome that did not have any focus, refused social interaction, had excessive stimming and have the label of Down syndrome and Autism. I understand that any label is an umbrella of symptoms, Down syndrome can mean speech, hearing, tone, joint issues but each child is different and may not present with all these issues. Autism describes an umbrella of symptoms too and yet each child is unique in their challenges. When a child's challenges become excessive, when they don't move forward as fast or far as other children even though they receive the same input a parent begins to sense that something else is wrong, something further is involved. Getting a multiple diagnosis is both a blessing and a curse. As a parent you feel better knowing that your child has unique challenges other children may not have but it is also easy to give up, to feel hopeless to let their challenges become the focus. When Sam received multiple diagnosis I had that sense of relief that he was different, more unique...but in my mind it just meant that we needed to be more creative, think further outside the box, question and research to figure out how to make things work for him. Having added a physical disability to the picture makes everything more difficult...but not impossible. I am not going to tell a parent that their child does not have a multiple diagnosis but I will tell them what Bob is saying that everyone, no matter who or what, can function better. I may not be able to get Sam into the super kid category but I will get his potential higher, he has already surpassed all medical expectations...for us the sky is the limit.</span><br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com0tag:blogger.com,1999:blog-7434662234064169811.post-23642999027782446192014-04-03T07:55:00.000-06:002014-04-03T07:55:47.388-06:00Such a Small World & the Power of Spirit!As I go through the grieving process I continually change or evolve my understanding of spirit.<br />
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spir·it</h2>
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<span class="lr_dct_ph">ˈspirit/</span></div>
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<i>noun</i></div>
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noun: <b>spirit</b>; plural noun: <b>spirits</b></div>
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<strong>1</strong>. </div>
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the nonphysical part of a person that is the seat of emotions and character; the soul.</div>
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"we seek a harmony between body and spirit"</div>
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<tr><td class="lr_dct_nyms_ttl" style="padding-right: 3px;">synonyms:</td><td><a href="https://www.google.com/search?biw=1024&bih=490&q=define+soul&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CCgQ_SowAA"><span style="color: #1122cc;">soul</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+psyche&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CCkQ_SowAA"><span style="color: #1122cc;">psyche</span></a>, (inner) self, inner being, inner man/woman, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+mind&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CCoQ_SowAA"><span style="color: #1122cc;">mind</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+ego&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CCsQ_SowAA"><span style="color: #1122cc;">ego</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+id&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CCwQ_SowAA"><span style="color: #1122cc;">id</span></a>; <span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="padding-left: 4px;">More</span></span><br />
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<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1">
<a href="https://www.google.com/search?biw=1024&bih=490&q=define+pneuma&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CC4Q_SowAA"><span style="color: #1122cc;">pneuma</span></a> </div>
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"harmony between body and spirit"</div>
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<tr><td class="lr_dct_nyms_ttl" style="padding-right: 3px;">antonyms:</td><td><a href="https://www.google.com/search?biw=1024&bih=490&q=define+body&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CC8Q_SowAA"><span style="color: #1122cc;">body</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+flesh&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDAQ_SowAA"><span style="color: #1122cc;">flesh</span></a></td></tr>
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<li class="xpdxpnd" data-mh="-1"><div class="lr_dct_sf_subsen">
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the nonphysical part of a person regarded as a person's true self and as capable of surviving physical death or separation.</div>
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"a year after he left, his spirit is still present"</div>
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<div style="font-size: small;">
<div data-dobid="dfn" style="display: inline;">
the nonphysical part of a person manifested as an apparition after their death; a ghost.</div>
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<tr><td class="lr_dct_nyms_ttl" style="padding-right: 3px;">synonyms:</td><td><a href="https://www.google.com/search?biw=1024&bih=490&q=define+ghost&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDEQ_SowAA"><span style="color: #1122cc;">ghost</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+presence&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDIQ_SowAA"><span style="color: #1122cc;">presence</span></a>; <span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="padding-left: 4px;">More</span></span><br />
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<div class="lr_dct_more_txt xpdxpnd xpdnoxpnd" data-mh="-1">
<i style="padding-right: 4px;">informal</i><a href="https://www.google.com/search?biw=1024&bih=490&q=define+spook&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDQQ_SowAA"><span style="color: #1122cc;">spook</span></a> </div>
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"a spirit haunts the island"</div>
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a supernatural being.</div>
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"shrines to nature spirits"</div>
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short for <a href="https://www.google.com/search?biw=1024&bih=490&q=define+Holy+Spirit&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDUQgCswAA"><span style="color: #1122cc;">Holy Spirit</span></a>.</div>
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noun: <b>Spirit</b>; noun: <b>the Spirit</b></div>
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<li class="xpdxpnd" data-mh="-1"><div class="lr_dct_sf_subsen">
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<span class="lr_dct_lbl_blk vk_gy" style="font-style: italic;">archaic</span></div>
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a highly refined substance or fluid thought to govern vital phenomena.</div>
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<strong>2</strong>. </div>
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those qualities regarded as forming the definitive or typical elements in the character of a person, nation, or group or in the thought and attitudes of a particular period.</div>
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"the university is a symbol of the nation's egalitarian spirit"</div>
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<tr><td class="lr_dct_nyms_ttl" style="padding-right: 3px;">synonyms:</td><td><a href="https://www.google.com/search?biw=1024&bih=490&q=define+ethos&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDYQ_SowAA"><span style="color: #1122cc;">ethos</span></a>, prevailing tendency, motivating force, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+essence&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDcQ_SowAA"><span style="color: #1122cc;">essence</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+quintessence&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDgQ_SowAA"><span style="color: #1122cc;">quintessence</span></a>; <span data-log-string="synonyms-more-click" jsaction="dob.m"><span class="lr_dct_more_btn" style="display: none; padding-left: 4px;">More</span></span><br />
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<a href="https://www.google.com/search?biw=1024&bih=490&q=define+atmosphere&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDoQ_SowAA"><span style="color: #1122cc;">atmosphere</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+mood&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDsQ_SowAA"><span style="color: #1122cc;">mood</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+feeling&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CDwQ_SowAA"><span style="color: #1122cc;">feeling</span></a>, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+climate&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CD0Q_SowAA"><span style="color: #1122cc;">climate</span></a>; </div>
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attitudes, beliefs, principles, standards, <a href="https://www.google.com/search?biw=1024&bih=490&q=define+ethics&sa=X&ei=pBg6U5vVI5TD0AGUtYCACg&sqi=2&ved=0CD4Q_SowAA"><span style="color: #1122cc;">ethics</span></a> </div>
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"the spirit of the age"</div>
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Not just my spirit, not just Sam's spirit..but the spirits of those that have passed before me...those who left my life before I was ready for them to go...even my understanding of the Holy Spirit.<br />
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As a Missouri Synod Lutheran we are taught about the Triune God and the role of the Holy Spirit. I always get nervous when speaking for the Lutheran Church, not because of my lack of faith but instead because of my lack of biblical theology but since my pastor also reads my blog I know he will correct me if I have spoken incorrectly. So in my understanding, the Holy Spirit gives the gift of God's grace, creates faith in the hearts of individuals, forgives sins for the sake of Christ's death on the cross, and grants eternal life and salvation. Hmmmm....it all sounds really churchy...and maybe it is just me but sometimes it is hard to take scripture and apply it to me and my life however when it comes to the Holy Spirit I think I got this. I know through the gift of baptism I was given the Holy Spirit and heaven was opened to me. For a long time I had a very passive relationship with the Holy Spirit...from my perspective, I talked the talk but I wasn't really walking the walk. I went to church, I attended Sunday school and I was confirmed and I continued to attend church...and then along came Sam...a child that would challenge my faith, what I believed and would ultimately strengthen my relationship with the Holy Spirit. <br />
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It wasn't the diagnosis of Down syndrome that brought me closer, I still thought I had this...I could figure it out...I was in control. Most people who know me well know I can be a wee bit of a control freak. It was when Sam got sick, when he would stop breathing, when he and I were in the ICU at Children's and I wasn't sure he was going to take his next breath...it was then...that the Holy Spirit and I became the best of friends. The realization that I was not in control, the realization that I could not handle both physically and mentally what was happening...that this was too much for me...was the turning point. The news that came after that Sam had most likely suffered a brain injury from his bouts of oxygen deprivation and the bleak future that was painted for my son should have devastated me...and yet I was empowered to question and seek guidance. It was at that point that I worried less and prayed more. It was at that point that I went from feeling helpless to getting a little angry that anyone could look at Sam...at that time a baby just a month old...and determine his future and all the things he would never be able to do. It was the push I needed to research more...to seek more...to follow my gut instinct. Hmmm...and that gut instinct...I feel that my gut instinct and my Internet research, the people I meet and even my GPS are all touched by the Holy Spirit. How else could I have found NACD, the organization that helped me surpass all Sam's medical expectations by the age of 3 years old? How else could my GPS lead us on some of the most amazing road trip journeys and yet always keep us safe? And how else can I explain what happened this weekend when I went to church and while I was working?<br />
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I used to attend church because, well...that is what you"re supposed to do...right??? I now attend church because going through the liturgy comforts and renews me, because I want to be closer to God and thank him for the blessings and challenges in my life...and...because I attended church with my Mom and Dad...I often feel close to them while I am at church. Sometimes it makes me happy as it did this weekend and sometimes I feel a little sad. When I say I feel close...it is at times like hearing them sing a favorite hymn with me or this weekend sensing them sitting with me as pastor went through his sermon. This weeks lesson was on the blind man who received his sight. I have always liked this lesson because it shadows much of what I feel in my journey with Sam. In the early days there was the question "Why did Sam have Down syndrome?" We all knew and understood the medical reasons it was the philosophical reason we were seeking, why would God let this happen, why would this happen to Jeff and Sue and their family, what did they do wrong?? Then...why respiratory/immune issues, why a brain injury, why hearing loss, why apraxia, and our latest, why hip dysplasia and Perthes??? Why did God give one little boy so many challenges??? I LOVE and understand what Jesus says: <strong><span style="font-family: Trebuchet MS;">"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.</span></strong><br />
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I found it interesting that the pastor went on to talk about the miracle Jesus then performed and eluded to the above statement as a literal fact that he was blind so Jesus could perform His miracle and show the work of God instead of a more generalized understanding. I doubt that there are few people who know Sam or his story, who read this blog, who have followed our journey...that haven't been touched, inspired or enlightened in some way. Sam's attitude, his purity, his acceptance of his lot in life, the cards dealt, the challenges and the blessings is something you can't help but learn from. I think if more of us approached life the way Sam does, we would be happier, more content and stress would be non-existent. Sam doesn't worry about material items, he cares more about people than things, he slows us down to appreciate more, he smiles and laughs a lot, he loves his family, he embraces everyone he meets, he never judges and he is content with his life. I like to think that the work of God is displayed in Sam's life daily and if a miracle would happen to come along...we would be okay with that too.<br />
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After I left church I headed to George Webb's for breakfast. It was busy and with only two waitresses on staff, patience was needed...luckily something Sam has taught me in spades. I sat next to a man who was waiting for his take out order. He quickly went from being patient to being rude and I thought of how that could have been me...before Sam. Living daily with Sam, really spending time with him has changed me in so many positive ways.<br />
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I went on to work my shift at Duluth Trading. I was assigned to the cash wrap and settled into my routine. An older couple walked up to my register to check out. I asked them the usual questions "Have you purchased from the store before?", "What is your last name and zip code?", the gentleman told me his name and zip code and then said it might be under his wife's name. It was at this point I felt a gentle nudge, not physically but instead as if someone was wanting me to notice something. I looked at their names again and then it came to me. I turned to the gentleman and said "Excuse me, but can I ask you something?" At this point one of my managers notices that I have strayed from the normal line of questioning and begins to listen in. The man says "Um sure"...so I continue. "A couple of years ago, did you and your wife send postcards and notes...and encourage your family to send postcards to a little boy with Down syndrome that was having hip surgery and would be in a body brace for 7 weeks?" They looked at each other and then turned to me and said "Yes, we did...his Mom was going to do a geography lesson with him". I teared up and said "Well, I'm that little boy's Mom...and Sam and I have wanted to thank you for doing that and tell you how much we appreciated it." At this point, everyone was tearing up and I shook their hands and told them how Sam was doing and explained to them how I have tried to locate them to thank them. I directed them to this blog so that they could catch up on Sam and...Jim, Jeannine...if you are reading this...thank you again for your kindness and know that your cards and postcards were so appreciated. To the spirit that helped us connect, thank you for helping me remember the name of someone I had never met from 3 years prior, thank you for bringing them into the store and to my register so I could thank them in person. This day was truly a testament to what a small world we live in and the power of spirit!!<br />
<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com0tag:blogger.com,1999:blog-7434662234064169811.post-88281524597374720552014-03-28T14:24:00.000-06:002014-03-28T14:52:26.989-06:00The Adventures of Sam and the Shiny New ScooterDue to Sam's numerous hip surgeries and his inability to weight bear for any length of time we decided to try for a scooter for Sam. After a few insurance snafus it was finally approved and arrived a week ago. Sam has been sick for a couple of weeks so today was our maiden voyage on his new scooter. Sam did have a trial one to work on steering and to master the controls so I knew we were ready to work on our first chore...retrieving the mail. I always like to start with simple auditory instructions and see how much Sam picks up and then as he performs the task I have some idea of the areas I need to work on further.<br />
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So far so good...he appears to be ready to go and headed in the right direction. After a brief issue with the video recorder we continued our adventure. Sam jumped right on, turned the key and was ready to go.<br />
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I LOVE how he stops, turns around and smiles as he realizes the new found independence he has just received. The first problem arises at the end of the driveway because Sam has been instructed not to drive on the road. During our trial period Sam thought on more than a few occasions that he might drive into Port Washington and visit his Dad and brother at work....hence why the "NO DRIVING ON THE ROAD" rule was put in place. I will have to show him how to STOP, look for cars and then proceed to pull up next to the mailbox so he does not even have to get off, then to look again and TURN AROUND (Yeah, I was pretty sure he would be testing that boundary) and return to the house. Did you notice the wee bit of panic in my voice when he headed toward Highway C??? Luckily we live on a dead end road and most of our neighbors know to watch for Sam.<br />
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Sam decided he liked driving his new scooter and decided to take it around our circle a few times. I went into the house to watch from a window giving him a further sense of independence. I know it sometimes makes my fellow moms of children with special needs and some friends and family members nervous when I work on Sam's independence...just wait until he has mastered the skill and I patiently wait for him to return to the house. It's okay...by that time I'll have it timed and I can run or bike faster than that scooter can go but please heed my warning on the end of the second video. If you turn on your TV and see Highway C or Interstate 43 is closed as police try to catch a young man on a scooter...you are probably going to want to call me or Jeff...QUICKLY. He continued to circle a few times, enjoying riding through the water puddles...what boy wouldn't?? I then notice he has stopped, I see him get off, his hands up in the air and as I open the window I hear "What da heck???" I knew I better check this out and this is what I found.<br />
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I honestly couldn't help but laugh even though Sam was a little distressed...especially since Jeff HATES when people drive off the edge of his driveway and into the mud and leave ruts. Sam had sunk in the mud and was just a spinnin those tires. Thankfully Sam's scooter has a release switch in the back that allows me to pull or push it without use of the motor...well that certainly came in handy...otherwise we would have had to call brother Ben to winch him out. Hee Hee! I encouraged Sam to drive it through the puddles a few more times to get some of the mud off...well I guess he certainly broke it in.<br />
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Ya just gotta LOVE this little man! More adventures to come!!<br />
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<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-87179560506857657132014-03-19T10:13:00.000-06:002014-03-19T10:13:52.487-06:00All In God's Time!I've been pondering this post for a long time. Each day I ask God to enter my life, I thank him for the blessings and the challenges, I ask Him to be with me every moment of every day, guiding me, protecting me and loving me. This last year has had more challenges than blessings...in fact...some would say my life in general has had more challenges than blessings...but sometimes I think we have to stop, reflect and really think about things and with an open mind and trusting heart...this life...is pretty darn amazing.<br />
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I don't know if it is just because I am getting older but I find myself reflecting more and more on my life, my experiences, my blessings and my challenges. When I was young I had a lot of dreams and when I reflect back I realize some of those dreams have come true, some never will, some have been changed or tweaked and some things that have happened I would have never dreamed of.<br />
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I am not the same person I was when I was young. My life experiences have changed me, shaped me, broke me down and built me up and that process continues today. I began this reflection on life when I was quite young, probably around the age of 25. Around that time my Dad was diagnosed with cancer and it was the first time someone so close to me faced a challenge I never dreamt of. I was scared for my Dad and for me. I didn't want to live life without my Dad, I didn't want him to be sick, I didn't want any of this to be happening...but it was. I wanted to run away...to not have to face that which I found difficult or unpleasent. I wanted to busy myself with my life, my needs, I had a lot going on, I was young and people would understand if I just couldn't...but I didn't. I was still living at home because I was working full time and attending college. I had planned to move out but decided to postphone moving to help my Mom with my Dad. Remember my prayer...hmmmm...was God guiding me???<br />
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I worked hard in school and to develop my Marketing career...some would even say I was driven. I worked long hours and I enjoyed the challenge of working my way up from a clerical position to management. As my career evolved I began to travel and explore the world beyond Port Washington Wisconsin...and I loved it. Remember my prayer....hmmmm...was God guiding me???<br />
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After I got married and had children my career began to take a back seat to my family. Although I really wanted and had dreamed to work full time and have a family, it seemed my life was taking a different turn. Ben needed more help in school, my travel did not work well with Jeff's work schedule, I wanted more children and the list goes on. I loved working, I enjoyed learning new things, I liked the challenge but I also felt the pull and need of my family. I found a less challenging job and took up volunteering at the Ronald McDonald House and Make A Wish to help me find my balance. Remember my prayer...hmmmm...was God guiding me???<br />
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I had settled into my new reality when along came my third child and the one that would rock my world and firmly establish my faith. I never dreamt of having a child with special needs, I would be lying if I said that was on my wish list. But this child...this perceived challenge in my life...would teach me more than I could ever hope to teach him, he would change me, challenge me, love me unconditionally, make me laugh and make me cry, slow me down and make me feel more...never taking a moment for granted.<br />
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As much as we question what happens in our lives...if we really take time to stop and reflect...it is amazing the way it all works out. I'm not saying that I understand every challenge or blessing in my life but there are times I can see glimpses of God at work.<br />
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This year has kept me guessing but let me paint some of the picture for you and maybe as you reflect on your life...as you try to find answers...as you come to terms with the challenges...as you just try to make sense of it all this will help you.<br />
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In this last year I have lost my father-in-law, a great aunt, my Mom, my best friend, other friends of our family and just recently my Dad. During this same year Sam had his 2nd major hip surgery which included having an external fixator on his hip for 4 months and the daily care that came with it. Danielle was diagnosed with Mono and missed over 90 days of school. This year was beyond challenging, beyond difficult and I still struggle with the grief, anxiety and questions that keep me awake at night.<br />
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And yet, if I take one event...the loss of my father and I explain the circumstances...both the challenges and the blessings that allowed me to spend the last 2 1/2 months with my Dad I think you will begin to see just how amazing God is.<br />
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My Dad was diagnosed with Stage 3 bladder cancer and Stage 4 lung cancer in November. My Mom had passed in February and the promise I made to her became a desperate need...I promised I would take care of my Dad while he was here on earth and until they could be together again. Easy to say the words...not so easy to implement when you are married, have a family, a home, a job, a child with special needs, another child who is ill...and the list goes on. <br />
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Add to this my Dad wanted to stay in his home, Sam is most comfortable in his home...and yet...it all worked out. But how it worked out, how God combined the challenges and the blessings, how he brought certain people in, how certain events fell in place is beyond anything you or I could orchestrate.<br />
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Let's start with Sam and my Mom. My Mom was my rock, my biggest supporter of my life and challenges with Sam...she loved that little boy just as much as I do. It would be easy to question God's plan on having me lose my Mom during the most difficult surgery of Sam's life...or could we look at it another way? There would never have been a good time to lose my Mom. She was an intricate part of my life and support system. Losing her at any other time would have been just as devastating and there is a good chance I would have withdrawn and become depressed. But when I lost my Mom...Sam needed me. I couldn't just curl up in a ball and let the world go by. I had to do pin care, problem solve the issues we had with Sam's healing from the surgery and try to get him stable again. I had to carry on, Sam's need forced me to carry on.<br />
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And as my Mom struggled to stay on this earth...I made the promise. The promise that would come to fruitition in less than a year. <br />
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So Sam got through the external fixator and the removal and keep in mind, the child who normally struggles with staying healthy was able to stay healthy during a difficult Wisconsin winter for the 2 1/2 months I took care of my Dad. My Dad had bladder surgery on December 2nd and I began to live with him at his house from Sunday evenings until Friday nights, on the weekends I was blessed to have my siblings take over and spend time with Dad and I went home to do laundry, clean and spend time with my husband and children.<br />
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Now anyone who has a child, but especially those who have children with special needs will begin to realize the juggling issue that comes with Mom, the main caregiver living off site for months. How did that work out??? Let's put the challenges and blessings together to watch how this worked out.<br />
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I have been blessed to work at two companies that know and understand my need for a flexible work schedule. Both companies supported me in taking time off work to care for my Dad. Hmmm...do you think my finding these jobs was part of God's plan? The fact that my husband's business is thriving and our family does not need my income to survive...might that be part of God's plan???<br />
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Along that line when I started working at <a href="http://www.duluthtrading.com/" target="_blank">Duluth Trading Co</a>., Danielle would watch Sam during the summer months and my Mom would watch Sam during the school year. With the loss of my Mom we had to rethink how I would be able to continue to work. While meeting with Sam's case worker I asked if <a href="http://www.balanceinc.org/" target="_blank">Balance Inc.</a> an organization dedicated to improving the quality of life for persons with developmental disabilities could possibly add Sam into their program. Balance normally only works with adults with cognitive disabilities but Sam has participated in their summer recreation program and they know him well. Thankfully Balance took Sam on...2 months before my Dad was diagnosed....hmmm another piece of God's plan? When everything happened with my Dad Balance stepped forward to offer additional care of Sam beyond my work schedule. Isn't it amazing the people God places in our lives? Thank you Sandy, Sara, David and the entire Balance organization for your love and support at a time when we needed it the most.<br />
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But, even with Balance's help that didn't cover 5 1/2 days a week of 24 hour care for Sam. Interestingly enough my last road trip was with my sister, my Dad, Danielle, Sam and Danielle's friend Isabella. When Bella heard about my Dad she stepped forward to offer her time to care for Sam. With Balance and Bella on board the schedule was beginning to come together but let's talk about one of those challenges that was also a blessing. Danielle was diagnosed with Mono at the beginning of her Junior year, she was only able to attend school 1/2 days for the first semester which just happened to fall in the same time frame that I was taking care of my Dad. Yep, God is good! Danielle could allow Sam to sleep in, get him dressed and spend time at home with family. But Danielle went above and beyond too, she helped with additional coverage for Sam, she kept the house in order, ran the dishwasher and helped where ever she could. Thank you Danielle!!<br />
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But even with all that...we still needed more coverage...and that is where I talk about my husband, Jeff. Jeff never for a moment, doubted, questioned or ever complained about me taking care of my Dad. He by far was the person that was most inconvienced by this situation and yet as busy as he is he handled it with grace. He covered the additional times for Sam, took care of Sam's needs each night, including showering and keeping him from missing Mom. He would even drive him over just so I could give him a hug and kiss. Jeff having lost his Father before me gave him a better understanding of how precious that final time is. I love you Jeff!<br />
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And there are other examples of how things needed to fall in place (equipment needs, friends working within my new schedule, doctors/nurses who cared, our whole respite experience) so I could care for my Dad. The challenges and the blessings combined and the outcome was something I could have never orchestrated on my own. Thank you God!!<br />
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It is easy to get caught up in the challenges, to question the reasons why certain things happen in our lives but sometimes we need to take time to stop, reflect, analyze and be amazed at just how crazy, wonderful this life really is. How the challenges, the blessings, the good, the bad and the ugly combine to create circumstances and opportunities that amaze us. <br />
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This year still hurts...my heart still mourns but my faith is what picks me up each day and pushes me forward. May you take time today to find the silver lining, to think outside the box, to appreciate all that makes up your life.<br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-64364084962477783282014-01-31T10:27:00.000-06:002014-01-31T10:27:12.977-06:00A Lifetime of Love...Miss You Mom & Dad!If I think back to my childhood...it was great! Funny...it was simple things that made it great. My Dad loved my Mom, my Mom loved my Dad and together they in turn loved us. It was about summer weekends at the cottage, time spent fishing or at the swim hole, all of us sitting around the table at dinner, pizza and soda on a Friday night, my Dad making popcorn, long talks with my Mom about...well...everything. So many little things that added up to a lifetime of love.<br />
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As I took care of my Dad in these last couple of months and stayed in my childhood bedroom....all the memories filled me, sustained me and comforted me. As a child my Dad was the strongest man I knew, he worked hard and alot but he had a movie star quality...my Dad could have been Omar Sharif's long lost brother the famous actor from Doctor Zhivago. He was handsome and quiet...unless you really managed to get yourself in trouble and then he was the strong voice of authority. <br />
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We were born and raised in a time when expressing feelings was not the norm. Think back to "Leave It To Beaver", proper, good etiquette but not touchy feely. I often referred to my Mom as Marilyn "June Cleaver" Boldt...not such a bad role model to have. So what made my Mom like June Cleaver...she was beautiful, proper, never had a bad word to say about anyone, she didn't yell, she had a way of changing her tone and she gave you a look that made you know she meant business. Her voice is one of the things I miss the most. She had a soft, almost sing song tone to her voice that in my world provided instant comfort. I loved how we could talk on the phone for hours. She was an amazing listener but one of her strongest traits was her almost therapeutic way of helping you make your own decisions. She listened, she never judged, she never told you what to do...she let you come to your own conclusions...a skill many people today do not have.<br />
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In contrast my Dad was quiet, a man of few words. He was hard to get to know, it was hard to get him to really open up and talk...and honestly...that kinda made him mysterious. He didn't wear his heart on his sleeve. I think, I believe...my Mom was the only person he really opened up to. My Dad did do one thing, probably one of the most significant things besides loving and marrying my Mom...he chose to stop the cycle of abuse. My Dad was an only child, his father was both verbally and physically abusive, his mother divorced and then proceeded to marry two others. His mother was a victim of abuse, low self esteem, trust issues, unable to express feelings and often seemed to view life from a half empty perspective. Her second husband was very similar to her first (my grandfather) and her third husband was probably the one that could have turned her life around. Mike Fruzen was a kind, gentle man that loved my grandmother Edna unconditionally and embraced her son and his family. Unfortunately Mike came along later in Edna's life and they did not have much time together before he passed.<br />
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I feel that my Dad's inability to express emotions stems back to his upbringing. As a test, while I stayed with him these last couple of months...I would say the same thing every night when he headed off to bed. "Dad, good night, sweet dreams and I love you". Each night he would turn, look at me smile and say "Okay, good night" or he would just say "Good Night" and continue down the hall. Having had a child that did not speak and was non-verbal until the age of 7 I never once doubted that Sam loved me eventhough he was never able to say it just as I never doubted that my Dad loved me too. Since my Mom's passing my Dad has picked out our birthday cards...I'm guessing a long tedious process for him...because it was in those cards that he attempted to express what he couldn't bring himself to say...and I have kept and cherish those cards.<br />
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I miss my Dad's beautiful blue eyes and am often brought to tears when I look in the mirror and see and remember the source of my "baby blues". I have engrained his smile in my mind and on my heart, an expression that for me told me more than words ever could. I miss you so much Dad!<br />
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My heart is healing...because...my Mom and Dad are again together...just as they were always meant to be. Yesterday my sister Wendy said that as she pulled into her driveway and looked into her front window she saw Mom sitting on her couch looking out the window. Wendy had a tough week at work and Mom must have known. Often times people think that if you return to work right away it is easier. Nothing about grief, missing a loved one, that empty feeling, the finality of a loved one being forever gone is easy. Life continues to be a distraction but there remains a void, a hurt, a need that you rationally know will never go away. The memories are priceless but the realization that all you have left is memories is still difficult to accept. Love the people around you, worry less and appreciate more. Get over the differences, the quirks and live life with that person fully and unconditionally.<br />
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I am often asked how Sam handles the passing of his grandparents. Hmmm...that is what I love about Sam. If you ask where Grandma and Grandpa are, he smiles and simply says "Heaven" and sometimes he will follow with "Home". Funny, in my homeschooling and religious education of Sam I don't recall ever really focusing on the concept of heaven. I need only turn back to the Bible to understand Sam's view and his comfort and peace...<br />
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Philippians 4:7</h3>
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<span class="text Phil-4-7" id="en-NKJV-29450"><sup class="versenum">7 </sup>and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.</span></div>
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<span class="text Phil-4-7"></span> </div>
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<span class="text Phil-4-7">AMEN!</span></div>
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-91921317010729120182014-01-22T09:03:00.003-06:002014-01-22T09:03:44.113-06:00Kenneth Lester Boldt, August 13, 1929 - January 20, 2014<span style="background-color: white; color: #777777; font-family: Georgia, serif; font-size: 16px; line-height: 27.200000762939453px; text-align: justify;">Kenneth Boldt, of Port Washington passed away during the evening hours of Sunday, January 19, 2014 of a broken heart at Lawlis Family Hospice Center in Mequon. He was 84 years old. </span><br style="background-color: white; color: #777777; font-family: Georgia, serif; font-size: 16px; line-height: 27.200000762939453px; margin: 0px; padding: 0px; text-align: justify;" /><span style="background-color: white; color: #777777; font-family: Georgia, serif; font-size: 16px; line-height: 27.200000762939453px; text-align: justify;">Kenneth was born in Milwaukee on August 13, 1929, son of Lester and Edna Boldt. On May 15, 1954 he married Marilyn Runge at Memorial Lutheran Church in Milwaukee. The couple moved to Port Washington in the early 60's to raise their family. Kenneth worked as a tool distributor for Tryman Distributors in Butler fo</span><span id="obit_about_full" style="background-color: white; border: 0px; color: #777777; display: inline; font-family: Georgia, serif; font-size: 16px; line-height: 27.200000762939453px; margin: 0px; padding: 0px; text-align: justify; vertical-align: baseline;">r many years. He finished his career at Frank Meyer and Associates in the early 1990's. Kenneth was a member of St. John's Lutheran Church in Port Washington. <br style="margin: 0px; padding: 0px;" />He enjoyed bowling, fishing at his cottage, reading, and building all types of models. He didn't just build his grandchildren barns and dollhouses, he created memories. He loved spending time with his children and grandchildren at his cottage in Winneconne. <br style="margin: 0px; padding: 0px;" />Kenneth is survived by his four children: Wendy Boldt of Port Washington, Steven (Martha) Boldt of De Pere, David Boldt of Port Washington and Susan (Jeff) Mayer of Grafton. He is further survived by seven grandchildren: Katie and Jeremy Unti, Christopher and Kyle Boldt, and Benjamin, Danielle and Sam Mayer, two great-grandchildren Ayden and Mia, three sisters-in-law Carol (the late Jack) Thaney and Sandy (Frank) Neils both of Neenah and Barb (the late John) Runge of Texas, nieces, nephews, other relatives and many friends. He is preceded in death by his parents and his wife Marilyn.<br style="margin: 0px; padding: 0px;" />Funeral services will be held on Thursday, January 23nd at 7 PM at the Eernisse Funeral Home, 1600 W. Grand Ave in Port Washington with Pastor John Klieve officiating. Visitation will be held at the Funeral Home from 5-7 PM on the 23nd. The Eernisse Funeral Home is honored to serve the family. In lieu of flowers, memorials suggested to St. John's Lutheran Church in Port Washington. Online condolences may be left at<a href="http://www.eernissefuneralhome.com/" style="border: 0px; color: #ea7900; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; padding: 0px; text-decoration: none; vertical-align: baseline;" target="_blank">www.eernissefuneralhome.com</a> </span>suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com4tag:blogger.com,1999:blog-7434662234064169811.post-38439263450637718112014-01-18T21:40:00.002-06:002014-01-22T20:39:06.491-06:00Hospice JournalBelow are my Facebook updates as I continue this journey with my Dad.<br />
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<span class="userContent">Thankful that I was able to get a good nights sleep. I think it was a combination of back pain, stress relief and sheer exhaustion and wow did I need that sleep. I got up early and returned to the hospice by 8:00. I wish I could say that <span class="text_exposed_hide">...</span><span class="text_exposed_show">Dad was happy and well rested too, but instead he began to complain as soon as I walked in. His eggs were cold, his coffee was cold, he didn't like it, he wanted out. I raised my voice a little and said "Dad, I am trying to do the very best I can for you. You are losing your strength and I can't take care of you and keep you safe on my own." He yelled back "I know that, you keep telling me the same thing over and over." But then in the next breath he wanted to get up and go to the bathroom. I explained he could not get out of bed on his own and he needed to call the nurse. And then I got it...it wasn't about the cold coffee or cold eggs, it wasn't about being here...his anger was coming from having to ask for help and being at a point that he could no longer do anything on his own. I took a deep breath, spoke calmly and said "Dad, I know you have done everything on your own for the last 84 years and you did it well...and I now realize that you are not used to and don't like having to ask for help and I'm sorry that this is so hard for you." He began to cry and I could see that I was getting close to figuring out what was really going on. After he wiped his eyes, he pushed the button for the nurse and he asked to go to the bathroom. It took 3 nurses to get him out of bed and on the commode. They quickly decided they needed to bring in equipment to help assist them. Dad then asked if he could brush his teeth and the nurse helped him do that while in bed. A short time later he hit the button again and asked if he could shave. The nurse asked if he wanted to do it or would he like her to do it? Dad said she could and when she finished he said "She does as good a job as I do". We were beginning to turn the corner. He next hit the button and asked if he could change his shirt and wash up. The nurse who came in this time was also wonderful and talked him through everything she was going to do. They talked and laughed together and I began to breathe again. When he was finally set and satisfied I noticed he still looked tense and continued to sigh. I asked him "Dad, what's wrong?" He became terse again and said "I'm making the best of it that I can." And then he finally got to the real problem. "I'm only here for five days and then what happens to me?" And now I had the real problem. I explained to Dad that instead of just doing the 5 day respite stay he had come into acute care and as long as he wasn't doing cartwheels in his room next week he could stay here for as long as he needed to. You could see the sense of calm move over him and he simply said "Well okay..then". I'm sure he will still find things to complain about, I wouldn't expect everything to change...but he is adapting to his new surroundings and I am breathing and feeling blessed again. So much of this journey can bring out the very worst in people...pain, loss of movement, loss of independence, being moved out of your familiar home and surroundings, having people make decisions for you, having to rely on the care of others for things you have always done yourself...any of those can trigger a less than desired reaction. By the time I left him in the company of Dave I could leave knowing he was going to be okay, spunky but okay and I know he is safe and is being cared for by some of the most wonderful caregivers I have ever seen. Looking so forward to another night of sleep.</span></span></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10201275404947629&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1&src=https%3A%2F%2Fscontent-b-ord.xx.fbcdn.net%2Fhphotos-ash3%2F1522147_10201275404947629_1636077989_n.jpg&size=554%2C443&theater&source=9" class="_6i9" href="https://www.facebook.com/photo.php?fbid=10201275404947629&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1" rel="theater"><img alt="Photo: Thankful that I was able to get a good nights sleep. I think it was a combination of back pain, stress relief and sheer exhaustion and wow did I need that sleep. I got up early and returned to the hospice by 8:00. I wish I could say that Dad was happy and well rested too, but instead he began to complain as soon as I walked in. His eggs were cold, his coffee was cold, he didn't like it, he wanted out. I raised my voice a little and said "Dad, I am trying to do the very best I can for you. You are losing your strength and I can't take care of you and keep you safe on my own." He yelled back "I know that, you keep telling me the same thing over and over." But then in the next breath he wanted to get up and go to the bathroom. I explained he could not get out of bed on his own and he needed to call the nurse. And then I got it...it wasn't about the cold coffee or cold eggs, it wasn't about being here...his anger was coming from having to ask for help and being at a point that he could no longer do anything on his own. I took a deep breath, spoke calmly and said "Dad, I know you have done everything on your own for the last 84 years and you did it well...and I now realize that you are not used to and don't like having to ask for help and I'm sorry that this is so hard for you." He began to cry and I could see that I was getting close to figuring out what was really going on. After he wiped his eyes, he pushed the button for the nurse and he asked to go to the bathroom. It took 3 nurses to get him out of bed and on the commode. They quickly decided they needed to bring in equipment to help assist them. Dad then asked if he could brush his teeth and the nurse helped him do that while in bed. A short time later he hit the button again and asked if he could shave. The nurse asked if he wanted to do it or would he like her to do it? Dad said she could and when she finished he said "She does as good a job as I do". We were beginning to turn the corner. He next hit the button and asked if he could change his shirt and wash up. The nurse who came in this time was also wonderful and talked him through everything she was going to do. They talked and laughed together and I began to breathe again. When he was finally set and satisfied I noticed he still looked tense and continued to sigh. I asked him "Dad, what's wrong?" He became terse again and said "I'm making the best of it that I can." And then he finally got to the real problem. "I'm only here for five days and then what happens to me?" And now I had the real problem. I explained to Dad that instead of just doing the 5 day respite stay he had come into acute care and as long as he wasn't doing cartwheels in his room next week he could stay here for as long as he needed to. You could see the sense of calm move over him and he simply said "Well okay..then". I'm sure he will still find things to complain about, I wouldn't expect everything to change...but he is adapting to his new surroundings and I am breathing and feeling blessed again. So much of this journey can bring out the very worst in people...pain, loss of movement, loss of independence, being moved out of your familiar home and surroundings, having people make decisions for you, having to rely on the care of others for things you have always done yourself...any of those can trigger a less than desired reaction. By the time I left him in the company of Dave I could leave knowing he was going to be okay, spunky but okay and I know he is safe and is being cared for by some of the most wonderful caregivers I have ever seen. Looking so forward to another night of sleep." class="scaledImageFitWidth img" height="404" src="https://scontent-b-ord.xx.fbcdn.net/hphotos-ash3/p480x480/1522147_10201275404947629_1636077989_n.jpg" width="504" /></a></div>
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<span class="userContent">The last couple of days are kinda hard to describe. We all know or at least can imagine that the process of dying is often times difficult. Everyone reacts differently, from the person dying to those who are surrounding and supporting them<span class="text_exposed_hide">...</span><span class="text_exposed_show">. My Dad's wishes were to die at home but his circumstances did not make that possible since he began to lose his strength and movement and he is not a little guy. More than likely the cancer bone spurs in his spine are causing his neurological decline. However, nothing could prepare my Dad for the quick decline of his physical function when his cognitive abilities remained in tact. So, he became angry, depressed, anxious and sad beyond anything I could have imagined. Although the Columbia St. Mary's Hospice is a beautiful place with amazing caregivers...my Dad just wants to die...and it is not happening quick enough for him. My mind knows that his anger is not at me or my siblings but is instead at his situation and he is so beyond ready to leave this earth and rejoin my Mom. Part of me is sad that he no longer wants to talk with us, that he will sob and cry out to my Mom and God but he can not carry on a conversation with us beyond what he currently wants or needs. I received a phone call yesterday morning from my Dad and he told me I needed to get him out of there, he hated it, the food was terrible, he didn't like the people and I needed to come get him. Dave and I decided to have a mini intervention but unfortunately my sister Wendy got there before us and got the brunt of the anger and when I walked in I got the sobbing and him asking repeatedly to die. As I tried to reason with him he told me "I don't know what you want from me, I just want to be miserable." As we explained that we were doing the best we could his only response was "I know that, I don't know why you keep telling me that". Today he is silent unless he needs or wants something. He rarely makes eye contact and spends most of his time looking at the church picture of my Mom and him.<br /> <br /> I remember reading: Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence.<br /> <br /> Actually...the silence is much easier than the anger or sobbing. At this point we know we just need to be there, not talking, quietly allowing him to focus on the process of dying. Tonight, my Dad required morphine to reduce his pain and hopefully he will sleep well. Tomorrow I will quietly read aloud the daily prayers Sam and I follow from the Lutheran Hymnal, maybe play music softly unless he tells me to stop and then I will and I will quietly sit by his side. We have all come to the realization that this is his journey, we love him, we will be there for him, we will support him in whatever way he needs us to and we will take comfort in knowing that soon he and Mom will be together again.</span></span></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10201288520475509&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1&src=https%3A%2F%2Fscontent-a-ord.xx.fbcdn.net%2Fhphotos-prn1%2Ft1%2F1536689_10201288520475509_257131549_n.jpg&size=316%2C273&theater&source=9" class="_6i9" href="https://www.facebook.com/photo.php?fbid=10201288520475509&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1" rel="theater"><img alt="Photo: The last couple of days are kinda hard to describe. We all know or at least can imagine that the process of dying is often times difficult. Everyone reacts differently, from the person dying to those who are surrounding and supporting them. My Dad's wishes were to die at home but his circumstances did not make that possible since he began to lose his strength and movement and he is not a little guy. More than likely the cancer bone spurs in his spine are causing his neurological decline. However, nothing could prepare my Dad for the quick decline of his physical function when his cognitive abilities remained in tact. So, he became angry, depressed, anxious and sad beyond anything I could have imagined. Although the Columbia St. Mary's Hospice is a beautiful place with amazing caregivers...my Dad just wants to die...and it is not happening quick enough for him. My mind knows that his anger is not at me or my siblings but is instead at his situation and he is so beyond ready to leave this earth and rejoin my Mom. Part of me is sad that he no longer wants to talk with us, that he will sob and cry out to my Mom and God but he can not carry on a conversation with us beyond what he currently wants or needs. I received a phone call yesterday morning from my Dad and he told me I needed to get him out of there, he hated it, the food was terrible, he didn't like the people and I needed to come get him. Dave and I decided to have a mini intervention but unfortunately my sister Wendy got there before us and got the brunt of the anger and when I walked in I got the sobbing and him asking repeatedly to die. As I tried to reason with him he told me "I don't know what you want from me, I just want to be miserable." As we explained that we were doing the best we could his only response was "I know that, I don't know why you keep telling me that". Today he is silent unless he needs or wants something. He rarely makes eye contact and spends most of his time looking at the church picture of my Mom and him.
I remember reading: Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence.
Actually...the silence is much easier than the anger or sobbing. At this point we know we just need to be there, not talking, quietly allowing him to focus on the process of dying. Tonight, my Dad required morphine to reduce his pain and hopefully he will sleep well. Tomorrow I will quietly read aloud the daily prayers Sam and I follow from the Lutheran Hymnal, maybe play music softly unless he tells me to stop and then I will and I will quietly sit by his side. We have all come to the realization that this is his journey, we love him, we will be there for him, we will support him in whatever way he needs us to and we will take comfort in knowing that soon he and Mom will be together again." class="scaledImageFitWidth img" height="436" src="https://scontent-a-ord.xx.fbcdn.net/hphotos-prn1/t1/p480x480/1536689_10201288520475509_257131549_n.jpg" width="504" /></a></div>
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<span class="userContent">Sitting here with my Dad and struggling to put my thoughts into words. Today they decided to give Dad hourly doses of morphine which has made him more comfortable. They think he may have had a mini stroke or the cancer in his spine has spre<span class="text_exposed_hide">...</span><span class="text_exposed_show">ad and he no longer has any movement on the right side. They told us that he is steadily declining and while he still has cognitive function we should tell him anything important. We took turns letting him know that we love him and that we are okay and if it is his time to go it's okay. A lot of tears and each of us struggled to get through. We asked him to tell Mom how much we love and miss her and we assured him that we will love and miss him too. We promised him that everything was okay and that we were taking care of each other. As each of us spoke, he sobbed and it broke our hearts but we are hoping he can continue to let go of this world and move peacefully into the next. Tonight they added patches to help with the congestion and gurgling. We are listening to his and Mom's favorite song "Unforgettable" sung by Nat King Cole and Natalie Cole and he has fallen deeply asleep. I finished the day with the nightly prayer and the prayer for the dying and now struggle to finish this post through my tears. My strength and peace are gifts from God and my faith is strengthened knowing that soon Dad will be pain free, cancer free and back with my Mom.</span></span></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10201298755931389&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1&src=https%3A%2F%2Ffbcdn-sphotos-c-a.akamaihd.net%2Fhphotos-ak-ash3%2Ft1%2F8003_10201298755931389_1286456188_n.jpg&size=258%2C195&theater&source=9" class="_6i9" href="https://www.facebook.com/photo.php?fbid=10201298755931389&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1" rel="theater"><img alt="Photo: Sitting here with my Dad and struggling to put my thoughts into words. Today they decided to give Dad hourly doses of morphine which has made him more comfortable. They think he may have had a mini stroke or the cancer in his spine has spread and he no longer has any movement on the right side. They told us that he is steadily declining and while he still has cognitive function we should tell him anything important. We took turns letting him know that we love him and that we are okay and if it is his time to go it's okay. A lot of tears and each of us struggled to get through. We asked him to tell Mom how much we love and miss her and we assured him that we will love and miss him too. We promised him that everything was okay and that we were taking care of each other. As each of us spoke, he sobbed and it broke our hearts but we are hoping he can continue to let go of this world and move peacefully into the next. Tonight they added patches to help with the congestion and gurgling. We are listening to his and Mom's favorite song "Unforgettable" sung by Nat King Cole and Natalie Cole and he has fallen deeply asleep. I finished the day with the nightly prayer and the prayer for the dying and now struggle to finish this post through my tears. My strength and peace are gifts from God and my faith is strengthened knowing that soon Dad will be pain free, cancer free and back with my Mom." class="img" height="195" src="https://fbcdn-sphotos-c-a.akamaihd.net/hphotos-ak-ash3/t1/p480x480/8003_10201298755931389_1286456188_n.jpg" width="258" /></a></div>
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<a class="uiLinkSubtle" href="https://www.facebook.com/suelmayer/posts/10201310235698376?stream_ref=10"><abbr data-utime="1389933957" title="Thursday, January 16, 2014 at 8:45pm">January 16</abbr></a><br />
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<span class="userContent" data-ft="{"tn":"K"}">Okay...so where do I start? Yesterday was really hard, Dad now receives morphine every 10 minutes with an additional blast available as needed for pain. He slept most of the day, had shallow breathing and at times would stop breathing for 30 to 40 seconds. We called my brother Steve and Martha to come and see Dad. As I held Dad's hand and told him that everything was alright and that I loved him <span class="text_exposed_hide">...</span><span class="text_exposed_show">he squeezed my hand and would not let go. I took this as a sign that I should stay, so Dave and I decided to spend the night. It is so very hard to watch Dad go through this but I felt so good about the wonderful care I saw him receive throughout the night. The people here are truly wonderful caregivers. Ben came in later at night and got to see a few sleepy Grandpa smiles.<br /> <br /> Today Dad had a bath early and when I came into his room he was wide awake. His left arm came out from underneath his covers and he began to rub his face. I told him they did an excellent job shaving him and he was as handsome as ever...and he smiled! I was shocked because we have not seen any sign of movement for the last day and a half. I will save that moment in my mind and heart forever. His big baby blues wide open with a big ole grin as he rubbed his chin, he looked like the Dad I remember and not the one cancer has attacked. He was awake for quite some time and I decided to ask him if he would like to watch Mom's memorial video, something he has not been able to do since the funeral...but this time he nodded yes. He watched and he did not sob, I however was a different story and as soon as I saw the pictures of Mom with my children I fell apart. The challenge of losing both of my parents in a year...I can't begin to describe the hurt...but knowing they will be together again gives me great joy. We have had a lot of moments today. The doctor came in and Dad seemed to follow the conversation and when asked if he was comfortable, he said "Yes". We have not heard Dad speak for quite some time. He smiled as he watched Let's Make a Deal. In the late morning he drifted back to sleep but when Jeff was ready to leave and told Dad goodbye and that he needed to get home to watch Sammy, Dad smiled again. When Jeff told him the story about Sam watching the snow fall and that it was "bootiful", Dad smiled again. He always liked Jeff and enjoyed when he would visit.</span></span><br />
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<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><abbr data-utime="1390007336" title="Friday, January 17, 2014 at 5:08pm"><a class="uiLinkSubtle" href="https://www.facebook.com/photo.php?fbid=10201315146501143&set=a.1098590265445.2015193.1247283742&type=1&stream_ref=10">J</a>anuary 17</abbr></span></span><br />
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<span class="userContent">The nurses had Dad on watch last night, coming in to check on him every 1/2 hour. Dave and I continue our nightly sleepovers because we don't want him to leave this life without having someone who loves him near. We had a lot of moments las<span class="text_exposed_hide">...</span><span class="text_exposed_show">t night. We prayed the Lord's Prayer over him, I hummed one of his and Mom's favorite songs just like she used to do, I held his hand and I prayed that God would allow him to leave this earth in comfort and peace. Had a long talk with the chaplain today, such a nice, caring man. We laughed, cried and talked about life, my Dad, my Mom and Sammy. I went home to take a shower and get extra hugs and kisses from Sammy, he must have said "I lub you, Mama" 15 times while I was there. Oh how I love that little boy. Feeling blessed to have my family rallying around Dad. We love you Dad, we love and miss you Mom...soon you will be together again!</span></span></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10201315146501143&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1&src=https%3A%2F%2Fscontent-a-ord.xx.fbcdn.net%2Fhphotos-prn1%2Ft1%2F1530350_10201315146501143_1508862262_n.jpg&size=288%2C175&theater&source=9" class="_6i9" href="https://www.facebook.com/photo.php?fbid=10201315146501143&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1" rel="theater"><img alt="Photo: The nurses had Dad on watch last night, coming in to check on him every 1/2 hour. Dave and I continue our nightly sleepovers because we don't want him to leave this life without having someone who loves him near. We had a lot of moments last night. We prayed the Lord's Prayer over him, I hummed one of his and Mom's favorite songs just like she used to do, I held his hand and I prayed that God would allow him to leave this earth in comfort and peace. Had a long talk with the chaplain today, such a nice, caring man. We laughed, cried and talked about life, my Dad, my Mom and Sammy. I went home to take a shower and get extra hugs and kisses from Sammy, he must have said "I lub you, Mama" 15 times while I was there. Oh how I love that little boy. Feeling blessed to have my family rallying around Dad. We love you Dad, we love and miss you Mom...soon you will be together again!" class="img" height="307" src="https://scontent-a-ord.xx.fbcdn.net/hphotos-prn1/t1/p480x480/1530350_10201315146501143_1508862262_n.jpg" width="504" /></a></div>
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<i class="UFICommentPhotoIcon" data-reactid=".r[x].[1][4].[0].{right}.[0].[0].[0].[1].[0].[0]"><abbr class="timestamp livetimestamp" data-utime="1390018873" title="Friday, January 17, 2014 at 10:21pm"><a class="uiLinkSubtle" href="https://www.facebook.com/suelmayer/posts/10201316299009955?stream_ref=10">J</a>anuary 18</abbr></i><br />
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<span class="userContent" data-ft="{"tn":"K"}">Today was filled with family again, Steve & Martha, Wendy, Dave & Margie, Danielle & Ben all came to visit with Dad. As Dave and Margie play Words with Friends and I read my book I feel at peace, calm, no longer anxious or nervous about what is to come. As I look at Dad he looks at peace, comfortable and I still see him smile in his sleep. I feel we are close to the end of our journey and I know a<span class="text_exposed_hide">...</span><span class="text_exposed_show">s I put my head on my pillow tonight and I look over at him I can say "Goodnight Dad, I love you" and I know in my heart that Mom is proud, that she is happy how we have pulled together to allow Dad to leave this life with such a strong feeling of love, peace and joy. He just had 2 big smiles as I write this message. God be with you Dad...you are LOVED!</span></span></div>
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<span class="userContent">I just finished praying the evening prayer over my Dad. He looks at peace and comfortable. Horizon Hospice is an amazing organization and I can't say enough good things about the hospice facility here and the staff that is caring for Dad. I<span class="text_exposed_hide">...</span><span class="text_exposed_show">t takes a special person to do this job everyday with the care and concern that they have shown my Dad. A lot of family in again today and now I'm just settling in for the night. Went out to breakfast with Dave after our stay last night and then went home to spend some much needed time with Sam. Sam was so happy to see me and we snuggled and watched Tarzan II together. At one point he said to me "Mama, Papa?" I told him Papa was at the hospital in hospice. He said "No, Papa go home" and he smiled. I said "Home or heaven?" He said "Yes" and smiled. He then gave me a hug and kiss. Through my tears I again thanked God for the blessing of that very sweet, very special little boy! I am at peace tonight as I stay with Dad and know that he and Mom will be together again soon. Love you Mom, Love you Dad!</span></span></div>
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<a ajaxify="https://www.facebook.com/photo.php?fbid=10201321222253033&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1&src=https%3A%2F%2Fscontent-a-ord.xx.fbcdn.net%2Fhphotos-ash3%2F1512608_10201321222253033_1975587543_n.jpg&size=183%2C275&theater&source=9" class="_6i9" href="https://www.facebook.com/photo.php?fbid=10201321222253033&set=a.1098590265445.2015193.1247283742&type=1&relevant_count=1" rel="theater"><img alt="Photo: I just finished praying the evening prayer over my Dad. He looks at peace and comfortable. Horizon Hospice is an amazing organization and I can't say enough good things about the hospice facility here and the staff that is caring for Dad. It takes a special person to do this job everyday with the care and concern that they have shown my Dad. A lot of family in again today and now I'm just settling in for the night. Went out to breakfast with Dave after our stay last night and then went home to spend some much needed time with Sam. Sam was so happy to see me and we snuggled and watched Tarzan II together. At one point he said to me "Mama, Papa?" I told him Papa was at the hospital in hospice. He said "No, Papa go home" and he smiled. I said "Home or heaven?" He said "Yes" and smiled. He then gave me a hug and kiss. Through my tears I again thanked God for the blessing of that very sweet, very special little boy! I am at peace tonight as I stay with Dad and know that he and Mom will be together again soon. Love you Mom, Love you Dad!" class="img" height="275" src="https://scontent-a-ord.xx.fbcdn.net/hphotos-ash3/p480x480/1512608_10201321222253033_1975587543_n.jpg" width="183" /></a></div>
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<span class="userContent" data-ft="{"tn":"K"}">Jeff brought Sam to the entrance of the hospital so I could visit and give him a hug. Although there are a few people in hospice with infectious diseases we decided that a quick visit with Grandpa would be okay. I loaded him into the wheelchair, Jeff parked the truck and we headed up to see Papa. Everyone was greeted by Sam with a smile and "Hi Lady" "Hi Man". Sam's presence lifts your spirits, <span class="text_exposed_show" style="display: inline;">you can't help but smile at him. As we entered the hospice he continued to greet everyone and this little boy just emits sunshine. He came into Papa's room and in his normally loud voice, said "Hi Papa". He said "Papa sleeping" and then he said "Papa...Grandma". After that he was ready to go and he continued to spread his sunshine all the way back out to the truck. After a few more hugs and kisses he went off on another Sunday adventure with Daddy. Love that boy!</span></span></div>
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<span class="userContent" data-ft="{"tn":"K"}">Last night while Dave and I said our final good byes and told Dad how much we loved him and will miss him he took his last breath and passed from this world into heaven. I know in my heart that he and Mom are finally reunited and his heart is no longer broken and as I put my head on my pillow last night I felt sad, my heart hurt as the realization of losing both of my parents in a year set in but <span class="text_exposed_show" style="display: inline;">I know he is in a better place. I am comforted knowing that he left this earth peacefully knowing how much his family loved him and will miss him. My Mom and Dad were amazing parents and I feel blessed having had them with me helping me to become the person I am today. I love you Mom and Dad, you will be forever missed. God be with you and our family as we celebrate your lives, grieve your loss and honor your memory!</span></span></div>
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-11273753716014093002014-01-06T20:04:00.001-06:002014-01-06T20:04:46.269-06:00Day 37 of Home Hospice...Live, Love & LearningTwo weeks ago Dad decided he couldn't safely drive any longer because of his waves of fatigue. Today he finally came to the conclusion that he could not live independently. My Dad is a very proud man and each of these steps of lost independence have been so very difficult for him and a sad realization for me...my Dad's time on earth is coming to an end. As his children we had come to these conclusions much earlier than him but I wait for him to choose to talk about them. With the help of my siblings we have created Dad's home hospice which is what is keeping him in his home, warm, safe and as comfortable as possible. I have given up working to live with my Dad from Sunday to Friday, Friday through Sunday afternoon is handled by my siblings to give me a much needed break.<br />
<br />
Today as I watched Dad move in what seemed to be slow motion, so unlike the man I remember...I knew in my heart that it is another step in his declining condition. He slept a lot today as he now does most days and we are again struggling with bodily systems that seem to be slowing down or stopping. Sometimes he has a blank look on his face and other times he walks to the bathroom or kitchen and then just seems to get stuck in time...he just stands there looking at the room...maybe not sure what he wanted or just too tired to go any further. After a while...he begins to move again but he is often frustrated or flushed. Taking a shower today again seemed to fatigue him. Still the hardest times are when he comes to the conclusion about his decline like he did today. It is like watching the life drain out of him as he discusses these things with me.<br />
<br />
He still perks up and talks at times for short periods or will watch a show until his head begins to drop again. To add to all of this we had a water main break in front of the house in these frigid conditions. The first one was on Sunday and we did not get water until later in the day. The third and fourth was on Monday and we have been told that if we have another one they will have to bring in a special crew to dig up the road and replace the whole system and we would be without water for days. Trying to look at our options if this becomes a reality. I have filled up buckets and the bathtub just in case...but with Dad continuing to decline I will also talk to the hospice nurse to see if hospice would provide temporary housing and care for Dad until we have water again.<br />
<br />
Because Dad is sleeping so much I'm trying to distract myself by reading the Bible, books from Danielle, Facebook and focusing on my families needs. Today I made yearly physical appointments for Jeff and I, vision appointments for Ben, Danielle, Jeff and I, dentist appt. for Ben, yearly appts. for me and coordinated the hip x-ray orders from Baltimore Sam will need done while he is under sedation for dental work in March. I then decided to research a vehicle that would accomodate Sam's scooter and required lift.<br />
<br />
And yet with all the scheduling and water main drama I still found it hard to keep my mind distracted. I did feel relieved when I watched the TV and saw quite a few commercials about nursing home abuse and knew that at least my Dad wasn't experiencing that. Thanks to my God given sarcastic sense of humor I am getting through. Yes, even some things about home hospice can make you chuckle. I know this concept is hard for some people...I first encountered this as I became friends with other parents of children with special needs...some like me could laugh about things that our children said or did and others would just cry...I think it is a coping mechanism and I am thankful for it. I also think that it is an accetance of our child for the person they are and not the person we were hoping they would be. And that got me thinking...what happened to taking care of our elderly or disabled...when did putting people in nursing homes become the standard procedure. For me...this has been yet another character building experience, defining my belief that every person is worth caring for and deserves loving treatment from family. I know some will debate that they have to because of work and circumstances...and I'm sure that is true for some...but how many just decide to take the easier route. I recently read an interesting article that I will share a link to here: <a href="http://www.oprah.com/health/Caring-for-Aging-Parents-Martha-Beck-Advice/print/1">http://www.oprah.com/health/Caring-for-Aging-Parents-Martha-Beck-Advice/print/1</a><br />
<br />
Take the time to read the article and think about it. I especially like the last paragraph:<br />
<br />
This is why traditional cultures value even the most fragile, disoriented elder,
why the Navajo carry "Grandmother's bones" with such reverent attention. Even as
you grapple with the logistical and psychological stress of eldercare, there
will be moments when you find yourself on the "blessing path." Rather than a
long day's journey into night, you'll feel yourself making a long night's
journey into day: through fear and confusion to courage and wisdom. Receive this
gift, the final one your parents can offer before they take off their shoes,
jump out the window, and fly home.<br />
Exactly!!<br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-32886631576388004282013-12-06T23:22:00.000-06:002013-12-07T11:37:34.507-06:00A Journey of the HeartThis week has been a whirlwind of moments and emotions. On Monday my Dad had bladder surgery to remove what they felt was a low grade, late stage set of tumors. I picked him up at 5:00 a.m. and I could sense his nervousness from his stiff walk to the way he continually rubbed his hands together. As an 84 year old man this was the absolute last thing he wanted to be doing this early on a Monday. I tried the best I could to calm his nerves while trying to keep mine in check, I straightened his hair after it got mussed up while changing into his hospital gown and I looked into those big blue eyes and said "We can do this Dad, I love you and I will be right here waiting for you". He smiled back as I told him to behave himself. I tried to engrave that smile in my mind, never wanting to forget how his lips gently curved, how his eyes locked on mine and how my heart yearned to make both the bladder and lung cancer just disappear.<br />
<br />
As I sat in the waiting room I texted family, thought a lot about my Mom and hoped, prayed and even visualized her sitting right there next to me. I could see her beautiful white hair, how she would be twisting and playing with her wedding ring, how she would watch the door the doctor was bound to come through with news on how the surgery went. I just so needed her to be there with me.<br />
<br />
Although the surgery was only 45 minutes...time seemed to be in slow motion. So many thoughts running through my mind, the what if's were only surpassed by the prayers of strength, guidance, and compassion that was going to be needed to get through his recovery process. When the doctor emerged he ushered me into a conference room and explained that Dad did really well and was in recovery. He explained that the tumors were large but he felt they were superficial and had not gone into the deeper layers of the bladder. He explained the catheter procedure and assured me they would provide training on the care and removal. As I listened to him explain the chemo they had directly injected into Dad's bladder my thoughts seem to drift to "yeah it all sounds good...but he's still fighting stage 4 lung cancer" the elephant that is always in the room when they give me their prognosis. I reel my attention back in to the doctor as he explains that he would like to keep Dad overnight because of his age and to monitor his vitals and the function of the catheter better. I agree with his plan and begin to breath again. He's out, he's stable and his bladder cancer has been removed. As I head back to the waiting room, the stress and anxiety take a back seat to the tiredness I feel from not sleeping well and getting up early. I drift to sleep until I am awakened by the receptionist who let's me know what room my Dad has been moved into.<br />
<br />
He is still groggy and on oxygen as I enter his room. I sit next to him and watch the machines that monitor his vitals desperately trying to keep them at good levels with just my will power. He continues to rub his hands and I am mesmerized by the motion. Those now heavily veined, wrinkled hands that once lifted me up as a child now reach for me again this time to hold on to and gather strength and reassurance that everything was alright. Life has a way of flipping the roles. I explain to him what the doctor said and I reassure him that he is doing well. As he comes to he begins to browse the room service menu and I am encouraged he is hungry. The nurses get him up and walking and he is looking good. Everyone comes to visit and he is talking and laughing, I leave the hospital reassured that he is in good hands.<br />
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I make dinner for the family, make lunches and then jump into bed early. I find it hard to sleep wondering how he is doing but manage to drift off until I am awakened at 4:30 a.m. when my cell phone rings. It is my Dad and I begin to worry as he sounds confused and disoriented. He is not sure where he is or what happened and how we got seperated. I ask him to ring for the nurse but he doesn't seem to understand. He asks me if he should remove all this stuff and I begin to panic. I let him know I am on my way. I quickly call the nurses station and they inform me that since he has taken the Vicodin he seems confused and disoriented. Well, sleep is no longer an option so I rush over to the hospital. Dad is sitting in a chair playing his Nintendo DS. He still appears somewhat confused and I notice they have alarmed his chair so that if he tries to stand the alarm sounds. The nurse and I chat and then I sit with Dad and try to see if the Vicodin is wearing off. He attempts to get out of the chair a few times, completely forgetting that he has an IV and catheter and the nurse and I get him seated and re-situated. To see my Dad in this state of confusion scares me. The nurses reassure me that Vicodin sometimes causes this type of reaction in older people. I wonder if this it what if feels like when your parent suffers from dementia...it's a terribly helpless feeling and all you want is for their personality and orientation to return to normal. The nurse came in to let me know the doctor would be releasing him and my nervousness was a little elevated. At this point I'm praying that the confusion I am seeing is just as they say, a reaction to Vicadin.<br />
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We are finally released at about 11:30 after a review of medications and a brief training on catheter care, bag changes and the problem signs to watch for. Our return appointment is set for Thursday at 1:00 p.m. I'm encouraged as we come through town that Dad says he is hungry and we pick up a snack pack for him from Culvers. I am so happy to see his appetite return after the radiation last week took it away. He is feeling good enough to want to stop and pick up new domes for his hearing aids...I was not so sure we needed to make a side trip and just really wanted to get him home but I agreed. I'm nervously cautious of his walking, he still seems a little unsteady and when we have to wait I worry about him standing too long or how much fluid is collecting in the bag strapped to his leg but I am also encouraged to see him this strong, this quickly after surgery.<br />
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When I get him home he makes me more than a little nervous by walking around the house unassisted and teetering both when he sits and stands. I had to catch him on more than one occasion. He goes into the bedroom to look for a sympathy card for a friend and I nervously wait for him to return. I don't want to follow him like a stalker but I also want to keep him safe. Suddenly I hear a big boom and run down the hall to have him smile at me and say "I'm fine". I give him the look and let him know he almost gave me a heart attack, he laughs and says "it was just the drawer, it was stuck...what did you think I fell over?" Ummm....yeh!!!<br />
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I find myself watching him, checking his color, listening to his breathing and monitoring his ability to move independently. As I sit in my Mom and Dad's house the memories make me both smile and choke back my tears. The hardest moments come when I hear my Dad talking to my Mom, what he says both touches and tears at my heart. The love and emotion in his voice is so hard to hear and yet just touches on the love they both shared. I look around my childhood bedroom and I smile and cry remembering so many things and wondering how we will ever be able to let go of this house that holds so many wonderful memories and my entire childhood.<br />
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I was so worried that Dad would get up in the middle of the night like he always did and not realize he had a catheter that I barricaded the side of his bed with a chair. He laughed at me but agreed it may be needed. Thankfully he slept well on Tuesday night, completely exhausted from his 2 nights of very little sleep. I wish I could say the same but I found myself listening for his movement, his snoring, his breathing and getting up a few times to check to make sure his catheter was draining properly. <br />
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The next morning he looked more rested than I did. He was doing so well that I decided to head to the grocery store and possibly have the family over for dinner. Plans changed quickly when I got back and he told me something was wrong, his catheter was leaking and he was uncomfortable. I called the doctor and spoke to his nurse. She asked me a lot of questions and then explained that this is common and it is very important that we get his bowels to start working. Anytime a system fails to work it sends the rest of the body into distress. He became shakier, having more difficulty standing and sitting, his bladder was spasming so much that it caused his back to spasm which cause his legs to give out. We were quickly headed downhill. The nurse asked me to test the catheter by closely monitoring intake compared to output. It quickly became evident that his output was not equivalent to his intake. I took him to Good Hope clinic to have his catheter flushed and as it turned out they needed to change it out. But again Dad had to lay on a hard table and his back was much worse than when we came in. By the time we got home his attitude began to follow the decline of his body and I began to pray. It is so hard to watch a loved one suffer as you stand by and feel helpless. I tried to remain positive and hopeful but he just kept saying "is all this worth it". I had him drink prune juice, he took milk of magnesia but he was quickly declining. His doctor called and suggested a suppository. I ran to the drugstore and together we kept trying to get his systems working. He became so weak I had to have Ben bring one of Sam's wheelchairs so I could get him back and forth to the bathroom. Finally his bowels began to function, slowly at first and then rapidly. As weak as he was we both could still manage to laugh and smile again. I truely hoped we had turned the corner but his catheter continued to leak and he was simply exhausted. I watched him through the night and he slept fairly good. The next morning I removed the catheter as instructed and prayed this would calm the bladder spasms.<br />
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He was able to shave but when he completed his shower you could see how much that activity had fatigued him. We went to his doctor appointment at 1:00 and found out that the doctor was wrong and the pathology showed a higher grade cancer that had gone into the second layer of the bladder but did not appear to be in the muscle around the bladder. He said he would normally suggest more chemo but considering my Dad's other condition the lung would probably progress much faster than the bladder. Again Dad had to lay back and his back was hurting again. We picked up a walker from his other doctor and returned home.<br />
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Today I have tried some topical pain killers to help relieve the back pain and just put pain patches on his back to help him sleep better. He seemed a little stronger today, a little more mobile and he ate okay. This weekend my siblings will take over to give me a break and allow me to get caught up at home. We are a close family and each are doing what ever they can. Dave brought books and dinner. Steve and Martha have checked in and will come down this weekend. Wendy has been cooking and cleaning. I am hoping that he will be strong enough by next week to require less care but only time will tell. Right now I am enjoying our conversations, feeling humbled to step in for my Mom and feeling blessed to have this precious time to take care of him.<br />
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This journey is both hard and affirming for my heart and mind. I continue to trust in the Lord and just carry on. Loved sharing Sam's 13th birthday with Dad and watching both of their faces light up. Exhausted and feeling the need to get some good sleep. Good night everyone and Happy Birthday Sam, my little warrior...I love you more than you will ever know or realize.<br />
<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-36626578336178116262013-11-25T01:06:00.000-06:002013-11-25T01:06:04.890-06:00Peace<div class="separator" style="clear: both; text-align: center;">
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On Friday Dad and I went to meet his oncologist. As we walked in we knew that once again the scans would be reviewed, the medical tests analyzed and the outcome would again be bleak. I quietly watched and listened to my Dad and the doctor review everything and discuss his situation. I only spoke when medical details needed to be clarified and to review the journey of how we ended up in this office...telling people over and over how you came to find out that your life was ending is not an easy thing for anyone to talk about. The doctor asked my Dad all kinds of questions about his current health status which when considered by itself would lead you to believe that my Dad is a healthy 84 year old man. The doctor even commented "Ken, if I hadn't seen your scans and medical tests and was basing our consult on just what you have shared I would think you are very healthy for being 84 years old...but." That tiny little word that turns our world upside down. "I have reviewed your scans and your lung cancer is at a very advanced stage as is your bladder cancer." He went on to discuss the possible treatment options, the medical approaches that could be considered and his approach on quality of life. Again I hear my Dad say the words that touch and break my heart at the same time "Doctor, I have lived a wonderful life, I lost my wife in February and I miss her more than I can express. I know that what I have can't be cured...that at some point this is going to end my life and I want you to know that I am ready to go. I want to enjoy my remaining days with my children the best that I can." I watched the doctor's eyes tear up and he said "Ken, I hope that someday when I get to be your age I can make that same decision and be okay with it too."<br />
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How many of us can say that we are happy with our lives, that we do not want or need anything else and that we can let go? My plaque, "Trust in the Lord with all your heart" flashed into view and I needed to be reminded of that as the doctor continued. He explained that although my Dad is not symptomatic at this point that he will most likely begin to experience more symptoms in the very near future and then he spoke the words I had been dreading...that in his experience a person with two late stage cancers would probably have a time frame of months instead of years and his best guess would be 3 to 6 months. Although the reality of what he said was clear and the impact of those words had us both in tears there was still a feeling of peace. I think God shelters your heart from what your mind is interpreting, kind of a shock reaction. He then went on to talk about setting up hospice and meeting with a social worker to put any and all medical paperwork into place. It is hard at this point to think of things like hospice and "Do not resuscitate" orders when your Dad is sitting next to you with little to no symptoms of cancer. Maybe instead of shock, numbness would be a better description of how you feel when you begin hearing these statements. My Dad's only issue at the moment is back pain which could be normal discomfort for an 84 year old or pain from the cancer in his spine. At this point the knowledge of what you have begins to work on your mind as to the source of the pain. Dr. Maul discussed with my Dad the treatment option of doing a short blast of radiation not to treat the cancer but instead to reduce the pain and that is what we will be scheduling for this week, along with a hospice informational meeting and a visit with the social worker. The following week he will have a procedure done on his bladder to remove the tumors.<br />
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Once the treatment path was agreed upon we again decided to lighten the mood and go out to eat. Really good comfort food can do wonders for soothing the soul. We talked about everything, came to an agreement on signing on with hospice even though at this point we would not require any services yet. I always thought hospice was brought in at the very end but Dr. Maul explained that it is better to bring them in early and have them perform things like checking vitals if running out in the cold or snow to a doctor's office is not appealing to the patient, assessing any medical device needs, providing emergency numbers and a care plan. We talked about chemotherapy and I listened as Dad thought it through but I did point out to him that I really enjoyed watching him enjoy his perch fish fry and sweet potato fries and often chemo causes a patient to lose their appetite or taste for food. Right now he has a great appetite. <br />
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Even with everything that is going on, the bleak prognosis, the medical interventions we still found things to smile, laugh and joke about. We both agreed that if we can keep smiling and laughing at times we are doing okay. For me, this journey is a rollercoaster of emotions. One moment I'm smiling, the next I am just staring at him, then the tears come for sometimes no reason at all, then something he says or does makes me smile or laugh and then I feel like I'm holding my breath and have to remind myself to take a deep breath and relax and the rollercoaster continues.<br />
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With all the medical appointments and the time frame we have been given I have decided to stop working for a while and just be there for Dad. Today was my last day of work at Duluth Trading to allow me to arrange meetings, go to appointments or just spend time with my Dad. I am so very fortunate to work for a wonderful company that has stood by me and supported me in the medical challenges I have had with Sam and now my Dad. I will miss work and my friends at work but I will always appreciate the time I spent with my Dad and I know that sometime in the future I will return to work.<br />
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As we come to Thanksgiving I have so much to be thankful for and although some days the challenges are overwhelming I know that there is always, always something to be thankful for. Wishing all of you a wonderful and Happy Thanksgiving. Enjoy your family, let them know you love them, forgive and forget the differences, embrace the time you have with them and cherish each and every moment! Good Night everyone!suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-50014402708630440852013-11-14T21:29:00.000-06:002013-11-14T21:29:02.026-06:00Going Forward In Faith<div class="separator" style="clear: both; text-align: center;">
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Whew...deep breath...I'm doing a lot of that these days. Ever since we received my Dad's diagnosis of stage 4 lung cancer and bladder cancer I have been praying and taking a lot of deep breaths...but most of all I have been enjoying my time with my Dad. At times like this the silly stuff that used to hold me back from having people over...like my house isn't in perfect order, or I'm trying a new recipe and am not sure it will be good, or I don't know if my guest will like my cooking, or my dog needs a bath and I haven't had time, or my homeschooling stuff is still out, or my folded laundry isn't put away, or on the other end I would stop in but I don't want to intrude, or I didn't call first so they are not expecting me...the small stuff...fades quickly into the "it really doesn't matter" box. What matters is an impromptu dinner with my whole family, bringing us together to talk, laugh, eat and just enjoy...being together. What matters is holding my Dad's hand or rubbing his back when doctor after doctor seems to only have more bad news. My Dad feels bad that I have to take him everywhere and instead I am honored to be there in my mother's place. What matters is seeing my Dad laugh and smile, despite it all. What matters is the closeness, just being together even if we have nothing to talk about, going out to lunch after yet another doctor appointment and laughing at Sam saying "Hi Lady" to every woman that walks by and you can imagine how many times the waitresses receive a greeting. I am slowly memorizing his laugh, his smile, the way he rubs his hands together, the wave in his beautiful white hair, how blue his eyes are, the way he chokes up every time he mentions my Mom, the way his eyes look and how he smiles when he talks about Sam. <br />
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This week was supposed to be a needle biopsy of the lung and a cysto of the bladder. On Monday I invited my Dad over for dinner. I made a yummy beef roast with potatoes, carrots and onions just like Mom used to. We prayed, ate, told stories and laughed together...another treasured moment. But something my sister said kept weighing heavily on my mind...why is Dad having the needle biopsy if he is not going to aggressively treat his cancer? After dinner and dessert I sat with Dad and asked him the same question. We talked about what his doctor had said after the petscan and why we had originally agreed to it...the needle biopsy would tell us for sure that it is cancer and what type of lung cancer. But what does that matter to us? They have no other logical reason for what showed on his petscan besides cancer, so I think we can safely assume that it is indeed cancer. Right now...my Dad is feeling okay...the usual aches and pains of any 84 year old man but nothing significant, no shortness of breath, no coughing, no unusual pain...so why do we want to poke at something that is not bothering him and see if we can stir it up???<br />
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When we met with the pastor my Dad said "I have lived a wonderful life, I miss Marilyn and I am ready to go." My Dad is a man of faith and he knows that this life is temporary and eternal life with God and my Mom awaits him and he is okay with that. Each time we meet with a doctor they encourage the needle biopsy and talk about the possibility of how they can help him and each time my Dad's words come back to me and I explain to the doctors that my Dad is looking for quality not quantity of life and can they guarantee he will have that with what they are proposing. Right now my Dad feels okay, why do we want to alter that. <br />
Today was the bladder cysto procedure and again I found myself rubbing my Dad's back as we listened to the doctor tell us that he sees at least 3 tumors but he thinks they may be a low grade and could be treated with a scraping procedure. I could see the hope in his eyes "that we got this" and I watched that hope fade as I explained that my Dad has also been diagnosed with stage 4 lung cancer. He encouraged the needle biopsy to be sure and began to tell us that it doesn't mean a death sentence. I stopped him and said "Dr. Zackarius my Dad is 84 years old, we lost my Mom in February at about the time this all would have begun...". My Dad spoke up and said "I have lived a wonderful life, I have loved and enjoyed my family and honestly I am ready to go". I watched the doctors eyes tear up and he asked "Ken, how many children do you have?" My Dad told him and he smiled as he mentioned each of us and where we lived. He said he would be lost without us and again I felt blessed by the moment. I explained to the doctor that after much thought and discussion as a family we feel quality is much more important at this point than quantity. He feels good and we are enjoying the time we have left together. He said he understood and he softly smiled. I said to Dad, "Okay let's do something fun, let's go eat." Dad agreed that was a good idea and we left the office with an agreement to treat the bladder before Thanksgiving if the cancer is a higher stage or after Thanksgiving if it is a lower stage.<br />
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I enjoyed watching my Dad eat a huge hamburger with sweet potato fries, a cup of coffee and a big glass of water. I no longer take the simple act of eating for granted any longer. My Dad has always had a beautiful tan and I noticed as we sat in the restaurant that his tan had faded or his color looked a little off. I decided not to trouble him but would contact his doctor when I got home. I dropped off Dad and made sure he got into the house okay. He smiled and waved as he walked through the door. I again memorized his every move.<br />
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I came home and began making the calls to my sister and brothers about the results of today's appointment. Made them aware of the oncology appointment next week, and that when the pathology results come in I will schedule Dad's bladder procedure. Then I sent a text to his main doctor asking him to run a blood test to check my Dad's levels and assure me that his blood count is okay. I love this doctor, he texted back and said he would call him first thing in the morning to come in for a blood work up.<br />
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I still have the pictures from my Mom's funeral at my house and tonight before I wrote this I took a walk down memory lane. The pictures of my Mom and Dad made me both smile and cry. I saw pictures of my Grandparents, Aunts and Uncles and all my cousins back when we were just kids...and I was absolutely cognizant of the fact that days like today had never even entered our thoughts. This thing we call life is precious, family even more precious...don't ever sweat the small stuff because you will come to a point in your life like me when it just really doesn't matter. Take time, enjoy each other for the quirks, differences and fun that makes us individuals and together makes us family and tell them you love them...don't wait...go outside your comfort zone, hug often, forgive, forget and appreciate the moments you have together.<br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com3tag:blogger.com,1999:blog-7434662234064169811.post-10095519462997111022013-11-01T22:26:00.001-06:002013-11-01T22:26:29.947-06:00Whew...One Day At A Time!<div class="separator" style="clear: both; text-align: center;">
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Yes, I've been missing from the blog world. Many have contacted me wondering...what happened...how's Sam??? Sam is doing well. He is walking with and without the walker throughout the house. I encourage the walker because without it his limp is severe and his gait looks pretty bad. With the walker his left hip is still contracted and he tends to walk on his tip toe on that side but his gait is smoother and more steady.<br />
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Sam will be fitted for a rear facing walker in an effort to improve his gait and a scooter to allow more independence when he is outside the house. Sam's hip is probably about as good as it will get at this point. He has fairly good range of motion with the exception of hip extension. This has bought us some much needed time to work on his chores, independence, academics and to enjoy our time together.<br />
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Sam has continued under the care of Dr. Vu to treat his sensitivities and assist with nutritional supplementation. Through Dr. Vu's help we have corrected Sam sensitivity to RNA, Vitamin D and have improved the function of his pituitary and thyroid. I will try to do a longer post on NAET and nutritional muscle testing and how it positively affected Sam and our family in another post.<br />
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Dr. Vu is also helping with my adrenal and energy issues and Danielle's mono. He is no longer with Strong Chiropractic but is working out of the Appleton Spine Institute until his office in Neenah is completed. As we enter the month of November I am thankful for all that Dr. Vu has helped us with.<br />
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It seems, at least in my life's journey that when I get one area stable God decides to challenge me in another. Today I had to let my 84 year old Dad know that he has Stage 4 lung cancer and bladder cancer. My Mom passed away in February of this year and I miss her each and every day. I promised her that I would take care of my Dad as long as he was here on earth with me and I intend to do just that. My heart hurt again as the doctor told me that my Dad had a 6x8 cm mass on his lung, the adenoids surrounding the mass are enlarged as are the adenoids in his chest and around his stomach and there is another tumor on the adrenal gland along with two areas on the lower spine. All of this along with the thickening in the bladder which is probably another type of cancer.<br />
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I took another deep breath, had a good cry, put my worries and concerns in God's hands and called my Dad and siblings. Tomorrow we will meet with his doctor at his house to discuss everything further and determine what happens now. I know in my heart that my Dad misses my Mom so much that his broken heart is leading this journey...but I don't think you are ever ready to say "Good bye" to someone you love so much. This is my Daddy, my Dad, my Father the man who along with my Mom shaped me into the person I am today.<br />
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I know and do not take for granted that I was raised by amazing parents. The love they had for one another and how they nurtured and raised each of us is a testament to both of them. My heart hurts and I am sad but I know that my Mom and Dad were never meant to be apart. They did everything together and they loved each other through good times and bad, in sickness and health and it appears death will not keep them apart for long either. As I told my Dad the news he said to me again "Kinda hard to believe this is all going on because I feel fine." And for that I am thankful and know that it is only by the grace of God that he continues to feel well. I pray that he continues to feel well for as long as he is here with us and when it is his time to leave this earth he does so quickly and without suffering.<br />
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Today, hug your family, call your Mom or Dad...tell them you love them...cherish your time together. Our time here on earth is short. Please pray for my Dad's continued wellness and keep our family in your prayers as we get through this, the only way I know how...one day at a time.suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com3tag:blogger.com,1999:blog-7434662234064169811.post-54150567872575515482013-09-20T12:29:00.000-06:002013-09-20T12:29:16.287-06:00Because I Love Him...<div class="separator" style="clear: both; text-align: justify;">
<span style="text-align: left;"><i>(If you are receiving this via email update, click on the title and go directly to my webpage to view the videos at the end of this post, they do not transfer via email)</i></span></div>
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<span style="text-align: left;">I'm often asked why I chose to homeschool Sam. I can always respond accurately that it is because of his medical needs, low immune system and inability to fight infection with typical medications. Most people are very comfortable with that response. I can refer to both his home program and his critical care pulmonologist that requested that I homeschool Sam. I have people to back up that claim.</span></div>
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<span style="text-align: left;">But the reasons that I homeschool Sam go much further than that. I have friends that are teachers, aides and even some in administration. I took time to train and become a parent liaison in our school district. I respect the role of teachers, therapists, school psychologist and those in the special education area. As in any organization there are great, dedicated people and then there are those that are not as passionate about their vocation. The good comes with the bad. My personal experience in the school system was pretty good, nothing major went wrong but being a logical person and looking at class size, available resources and Sam's level of need I wondered if we could do more at home.</span></div>
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<span style="text-align: left;">Jeff and I decided on the day that Sam was born that we would love him, enjoy him and work with him to the best of our abilities. Funny thing...if you would have brought up homeschooling at that time...I would have said "NO WAY". As time went on and Sam had more and more health issues including a brain injury from oxygen deprivation, I realized that our abilities were going to be tested more than I could have imagined. While in the ICU with Sam I was told he would probably not walk due to right side weakness, his speech would be limited or he may not talk at all and his cognitive abilities would be substantially reduced. All I could think about...was where did that doctor get his crystal ball?? This was an infant, a child that had not even been worked with...to me a child who's potential was unknown. Because God knows me best he knew that was what I needed to hear because that was the push I needed to prove them wrong. I'm stubborn and I often question that which I don't understand and don't even get me started on how I have questioned and tested the medical community in every aspect of Sam's journey. That same questioning has rocked my faith but over the years as more challenges have presented themselves and I have gotten through I have learned trust, trust in that which I have no control over. I am not strong enough to make it through the challenges in this life on my own, it is only by the grace of God that I continue on. Trusting God has become easy but trusting anything on this earth is still a challenge for me.</span></div>
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<span style="text-align: left;">Due to Sam's issues beyond Down syndrome we sought out help and expertise on how to work with Sam and help him reach his full potential. NACD (www.nacd.org) has been a driving force and friend in our journey. I started working with Sam and NACD when he was 18 months old. Although Sam had been in the state's "Birth to Three" program since he was 6 weeks old...I just didn't feel it was enough. Everything I researched and read about encouraged me about the brain's plasticity and ability to make new connections but the direct input and the amount was something I felt we needed to improve on. Studies showed that children receiving early intervention were doing better than those that had not but in my mind the percentage was still too low and Sam had more than just a few issues going on. Sam's therapists were excellent but they only saw him once or twice a week for a short period of time. Working with NACD allowed me to work with Sam every day and give the input he needed to re-learn how to use the right side of his body, to crawl, to walk, to run, to learn to read, to improve his processing, to work on his vision issues, to strengthen the areas that were weak...to help him grow and develop.</span></div>
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<span style="text-align: left;">As I worked with Sam and saw things change I began to understand and feel the joy that comes with helping another person develop on a level that I had never experienced before. I had taken for granted my other children's development and I realized that it isn't until a child can't do something, something fundamental to their development that you can either feel powerless or dig your heels in and work on it. Sam and I bonded on a whole different level. It wasn't just about doing program or working the muscles it was about building trust and forming a working, loving relationship. To see Sam crawl, walk and then run (things he was never expected to do) and know the hours of deep pressure, input into his muscles, work on his gait and balance that made that possible is an accomplishment like none other. To watch Sam read and know that I taught him how to read makes my heart smile. To see Sam accomplish a set of instructions and chores and know the steps that we had to go through to get there humbles me. To hear Sam speak, to hear him communicate and know the hours of practice we have put in, the hours of oral motor and endless attempts at conversation we have gone through is...priceless.</span></div>
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<span style="text-align: left;">I remember when Sam was born, he was on oxygen for the first day or so and I wasn't able to hold him. As I sat in my hospital bed...I wondered...after learning his diagnosis of Down syndrome...would he look at me or would he look right past me? Would I see something in those eyes, a light, an indication of something or would he have a blank stare. I knew nothing about Down syndrome and that lack of knowledge scared me. But what I do remember is the moment they brought Sam to me and placed him in my arms. I turned him upright so we could look face to face and as I held him he looked directly into my eyes, directly into my soul. I could see that there was so much inside this little man, so much he wanted to share and tell me and I decided at that moment that he and I could do this. We were going to be okay...no matter what.</span></div>
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<span style="text-align: left;">I'm glad I didn't have that crystal ball...the future would have overwhelmed me. As Sam and I worked together we learned how to work together, what works and what doesn't. I sometimes think as people read my blog they think that Sam is easy to work with, compliant and a child that looks forward to his program. Well, you would be very, very wrong (I'm sure Ellen Doman will vouch for me on this). Sam has fought through much of his learning but has learned despite it. Often times children with Down syndrome are thought to be gentle, loving, happy but I'm sure most parents of children with Down syndrome and teachers and therapists that work with them will tell you they have a gold medal in being stubborn. Sam was doubly blessed with a gold medal in being stubborn along with two parents that gave him stubborn as a genetic trait. Sam has hid program elements, fed them to the dog, ripped them, thrown them away and scattered them on the floor too many times to mention. Sam has yelled, cried, screamed, spit and thrown books to discourage reading. Have we had behavioral items on program, yep...too often to mention.</span></div>
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<span style="text-align: left;">Now don't get me wrong, Sam has the other traits of gentle, happy and loving...when he is doing something he wants to be doing. Very much like his older brother Ben...Sam is not fond of school. Ben and Sam liked the social aspect of school, seeing friends, being part of a group but that is pretty much the extent of it...oh yeah...lunch and riding the bus was fun too. As for academics these two can make any teacher's day a nightmare. Over the years I have figured out that each of them have very specific learning styles. With some modification I could adapt Ben's to life in the public school, not without it's challenges, but it was doable. Sam, so far has been a whole different challenge.</span></div>
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<span style="text-align: left;">So much of Sam's learning is built on trust. He will try something or work on something because he loves me and he trusts me. Sam loves to see me get excited when he learns something, acting excited and actually being excited are two very different things for Sam. He can read acting and he may tolerate it for a while but he really wants to see true excitement. It is a lot to ask of any teacher everyday. Which leads me to another reason I homeschool. I have spent years trying to figure out the best ways to work with Sam and if I am honest...I'm still trying. Some things I have figured out and can now run with, others are still a work in progress but all require a level of patience that even I find hard to maintain. Sam is one child and I am working with him one on one and we struggle. I often read about and know children with special needs that are doing very well in school. Many of them appear to have fairly good speech and have learned to adapt to the classroom setting. In my day to day work with Sam I think he would either choose to withdraw, stim and learn nothing or fight and quickly wear down anyone who is working with him so that his behavior would become the main focus and learning would still not be occurring. I also know that if Sam were to come across someone who didn't care, wasn't passionate about teaching, chose to see his behavior as the only problem it would be detrimental to his continuing to learn. I have had my moments with Sam when I have wanted to give up, to give in to let someone else fail at this and be able to say "It's not my fault". But that's where I come back to my commitment to Sam, maybe the reason God chose me to be Sam's mom. I pray...and we go on.</span></div>
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Sam's physical issues are another reason I homeschool. Sam has limited mobility and he does need to recline at times to take pressure off his hip, not the best set up for a typical public school classroom. Sam and I have figured out how to work together at a desk, in a recliner, laying down, inside, outside and in a body brace. We got this.</div>
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But if you want my real answer as to why I homeschool Sam....it is because I love him. Sometimes when a person is challenged or difficult or stubborn it just takes LOVE to get past all of it. I work hard with Sam because I love him, I believe in his abilities because I love him, I get past his behaviors because I love him, we figure out how to work together because no matter how many mistakes I make...he still loves me too. Sometimes like the song says...all you need is love.</div>
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Here are some videos from our recent attempts at ramping up Sam's home program. They are not the best of the best, I have always promised to be real on this blog, to show the good, the bad and the ugly...but no matter what...I LOVE THIS LITTLE BOY AND THANKFULLY HE LOVES ME TOO!</div>
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<span id="goog_1509101688"></span><span id="goog_1509101689"></span><br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com6tag:blogger.com,1999:blog-7434662234064169811.post-28710859829112191312013-09-15T14:46:00.001-06:002013-09-15T14:46:39.964-06:00Living The Lessons...The Best I Can!I have always said that Sam will teach me more than I will ever teach him. For those who have never experienced life with a child with special needs you may question how that can possibly be. Our children teach occasionally with words but more often with the way they live, how they handle challenges, their innate happiness even in the most demanding of times, the way they view life and the people around them. I have always tried to teach all three of my children that when a challenge, unpleasant situation, or conflict enters your life...you have a choice. You can choose to look for the blessing, learn something new about yourself...or be miserable. I never had to teach Sam that lesson...he exemplifies it...he lives it.<br />
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Another lesson learned during my journey with Sam is to never judge...to never look at another human being and their circumstances and think I could do it better...because I have been on the receiving end of that type of judgement. When I chose to utilize a program like NACD...I had skeptics and those who spoke out on my wasting money to help a child that had no future (after all Sam had both Down syndrome and a brain injury). When my child acted out and I chose to see that as a form of communication instead of just bad behavior I had those that doubted my findings. When I chose to speak and mimic my child's attempts and beginning sounds of communication in an attempt to pull out more sounds and beginning speech I got more than a few strange looks. When I decided to homeschool Sam I also had a lot of critics from both those with and without a child with Down syndrome, we fight for inclusion and I was choosing not to include my child. When I traveled to Baltimore to receive further orthopedic expertise than that available at our Children's Hospital I had naysayers in the medical community and others who felt the treatment was too extreme for a child with multiple special needs. Researching and choosing to use alternate methods of medical care for Sam has caused people to question my intentions. Soooo...I pray a lot...and I follow my gut and I do what I feel is right for my child.<br />
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Through our numerous medical emergencies I have learned a self-imposed calmness. Sam watches me, Sam learns from me, Sam looks to me for guidance in every situation. My actions speak so much louder than words. The families that follow my blog that have a child with Autism can probably directly relate to this. When we are in a medical emergency, I try to get Sam to focus on only me and what I am saying. I speak in quiet, calm tones and my body language is calm and reassuring. My voice is monotone and my expression is calm confidence. It takes only a second for Sam to see me tense up before he begins to do the same, if I escalate he escalates more, if I cry or raise my voice he becomes upset, frustrated and will no longer cooperate. So much of any situation with Sam is a direct reflection of my own words, actions and body language.<br />
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Now I don't want you to think for even a moment...that I'm perfect at implementing each of these lessons. I prefer to think of myself as a work in progress. Even when my actions are acceptable...my thoughts still want to fight accepting the lessons learned...I am after all human. I like to think of this process of coming to terms with my lessons learned as a shaping or development toward the person God would like me to become. Of course...lately...I think he's been hammering the heck out of me and my most recent couple of weeks seems to be following suit.<br />
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Right before Sam and I left for Baltimore my 16 year old daughter went to her first day of school and then ended up in the ER that night being diagnosed with Mono and a bladder infection. Not the best start for her junior year of high school. I picked up her prescription, took care of her for the first couple of days she was home but then had to leave for Sam's check up in Baltimore.<br />
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I packed up my suitcase, notified the school and made arrangements, went over everything with Jeff and my sister in law, assured Danielle I was just a text or phone call away and headed to the airport. Travelling with Sam is always an adventure. Picture me at the airport, getting out of the car and grabbing my airplane backpack which includes the must haves (fully charged IPad, gluten free snacks, Sam's medical/therapy reports, Sam's inhaler and respiratory meds, Sam's stress ball, Sam's sweatshirt and I throw in a snack for me, my sweatshirt and a magazine). I open the trunk and pull out Sam's wheelchair, walker and our suit case. Over the years I have learned how to become a pack mule. I throw the back pack on, pull the suitcase on wheels handle up, slip the walker over the handle and proceed to push Sam through the airport with one hand while pulling the suitcase/walker combo with the other. After maneuvering our caravan on/off elevators and around various obstacles we arrive at the check in area. Sam begins a meet/greet with the attendant and I place our suitcase on the scale...keeping in mind Sam's need to push things standing up over I quickly face him in the opposite direction and get our boarding passes. One less item allows me to now push the wheelchair with both hands while hanging on to the walker with my thumbs. The entire time we are walking through the airport Sam is smiling and greeting every person we pass "Hello Lady" "Hello Man" "Hello Boy" "Hello Girl" "Aww Cute Baby" and I smile and greet them also.<br />
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We arrive at Security and if it is a good day we are ushered to the shortest line. I have to remove Sam's shoes, my own, unpack the IPad, place the backpack in a bin and then with a smile push Sam toward the attendants explaining that he can not walk through on his own. This gets me the "deer in the headlight" look. Extra security is called in and Sam is pushed to a different area after I reassure him that I am right behind him. I smile as I walk through and collect our items and join Sam in the secure area. After Security determines their protocol I help to walk Sam through the additional scanning, potential pat down and surrender his wheelchair and walker for additional security checks. The Milwaukee airport is fairly easy to get through, not so at our destination airport of Washington DC. I'm not going to tell you that I don't dread getting Sam through security because I never know what the protocol will be or what they will expect of Sam. I am a firm believer in making sure that our air travel in this country is safe so I choose to smile and cooperate in an effort to help Sam do the same.<br />
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Once we are through security I need to make sure that Sam's walker and wheelchair are gate checked and have the proper tags and then we settle in to wait for our airplane and our next potential challenge. Every airline's boarding policies are different...after both good and bad experiences...I now have only one boarding policy. Sam will board first, before 1st class, not at our designated time as referenced by our zone and not when someone else decides it would be a good time. Been there...done that. Sam's ability to walk unassisted is limited and when he is moving, stopping really isn't an option unless it includes sitting. I have had first class passengers block the aisle as we are boarding, I have had people place their bags in the aisle blocking Sam from his seat, I have had people's feet and various body parts causing hazards for my child who's only focus is to get to his seat and sit to relieve the pain. I have had people judge my child as rude because he has pushed them out of the way or asked them very loudly to "MOVE". If that person had the pain and discomfort Sam experiences when walking without assistance I think those two actions would be the least of their worries. Sam when seated is a wonderful traveler.<br />
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We had a "It's a small world" moment when at the Washington DC airport I began talking to a young girl who just happened to be the niece of a dear friend who also has a wonderful young son with Down syndrome. We also had a few "kindness of strangers" moments when I met a woman on the car rental bus who really enjoyed meeting Sam and a man that was kind enough to help me load and unload Sam and all of our items to get to our car rental.<br />
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I had explained to Sam numerous times where we were headed and why...and yet in Sam's single track mind...he had decided we were going to Florida. You can imagine his dismay when we arrived in Washington DC and there were no palm trees. In order to help alleviate Sam's anxiety about why he is coming to Baltimore I planned some fun events around our stay. When we arrived we met up with Jeff's cousin Shelly and her two children for a fun time at the Aquarium. Now usually...the Aquarium would be a hit with Sam but I did mention Sam's one track mind...he was still a little angry that we were not in Florida. Sam would push away from the exhibits and after several attempts to correct his behavior I could tell he was digging in his heels so I begin to model correct behavior and ignore his attempts to escalate. I found the perfect spot for Sam behind a concrete pillar, he pushed back and could go no further, being a smart child he quickly realized his strategies were useless and he actually began to look at the fish, sharks, and sting rays swimming in front of him. We then went to see the dolphin show and Sam seemed to enjoy many parts of it but he didn't really lighten up until we got to the restaurant and then he sort of got delirious. The real Sam made an appearance when we left the restaurant and stopped to watch a street performer. He was interested, engaged and enjoying the show.<br />
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We then headed to the Hackerman Patz House which is where we stay in Baltimore, right across from Sinai Hospital. We had a beautiful large room and Sam and I were happy to settle in for the night. It is a beautiful home away from home and we adore seeing Amy who is the fountain of knowledge on where to eat, what to see, and how to get to places.<br />
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After getting Sam up and showered, dressed and completing our stretches and exercises we headed over to the hospital for breakfast. After breakfast we made our way to our appointment in the orthopedic wing. Our appointment was at 11:00 and we arrived at 10:55 as instructed. We first heard that Dr. Standard was going to be late and our appt. would be delayed an hour or two. Fifteen minutes later we heard that Dr. Standard would not be coming in at all. My first reaction was to say "but we flew from Wisconsin to see him" and then I remembered how I often wondered what happened when a high profile doctor had a family emergency. We learned Dr. Standard's wife had their baby on Saturday morning, one week early and the reinforcements (also known as the in-laws) had not arrived yet. On top of that one of his other children was spiking a high fever and needed to go to the pediatrician. Being a Doctor had to wait because being a Dad should always come first. Soooo....we were disappointed but if there is anyone that understands "life happens"...it's me. Sam would have his x-ray and we would see Chris, Dr. Standard's PA. Sam felt the need to yell a little before getting on the x-ray table but once he got on and figured out it had a soft pad he pretty much settled in. The x-ray was completed and we returned to the waiting room. And we waited and waited and waited and finally got called into a room where we waited some more. I could see the stress Dr. Standard's absence caused on his staff from Anne, to Marilyn, to his nurse and I was only guessing the stress Chris was now experiencing so Sam and I prayed for Dr. Standard and his family, for the staff, for the parents who's disappointment would be greater than ours and for patience, guidance and understanding for us all. I began to find a blessing...Sam was calm, Sam was okay with waiting and Sam was patient...not typically the words I would use to describe Sam Mayer and especially while in a medical facility. I strived to reflect his example...also not easy for my "A type" personality. At 3:00 p.m. Chris finally came into our room looking tired, a little frazzled but with a smile on his face. During the time we waited I had ample opportunity to write out my questions, our current situation and the concerns of Sam's therapists.<br />
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When we started the journey with Dr. Standard and I heard from other parents about their child's results after treatment I began to have hope again. When I met Becca and her family, especially her Mom Marge, they helped me come to the decision to go forward...that glimmer of hope grew. My analytical side knew that Sam's Perthes was in a late stage, that much damage had been done due to over 100% collapse and that his situation was unique...but I also believe in miracles. I needed all of that to get through the external fixator process along with my faith in God.<br />
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I wanted to come on my blog and write how Sam was that miracle story, how Sam defied the odds and is now fully mobile and the effect of Perthes is no longer a problem in his life. But that is not what I am here to do. And yet again, I have a choice to see the blessings or to be....miserable. We are definitely in a better place than when we started with Dr. Standard. Prior to the external fixator Sam could not move, he couldn't get out of bed without narcotic pain medication. His first surgery had done an excellent job in keeping his hip contained but he still had significant pain, zero mobility and a daily regimen of narcotic pain medication and muscle relaxers.<br />
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Now Sam is able to walk throughout the house with his walker and sometimes unassisted. He has regained the independence of being able to get his computer, food and use the bathroom without assistance. For my friends of children whom are wheel chair bound they can vouch for the simple blessing of movement...being able to transfer, any type of walking with or without aid, re-gaining independence and the freedom that comes with the ability to move. Sam's movement is completely without the use of any type of pain medication. We are blessed!!<br />
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Sam's unassisted walk is in one word...ugly. His hip is hiked up as he walks on his tiptoe on the left side, the limp is severe and he seems often times in pain. We also hear at times a very loud audible click coming from the left hip. Here is a video for his home program to assess his gait.<br />
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No he's not walking everywhere, running, jumping and working on his next triathlon. No our story is not going to have that perfect ending...unless God steps in and miraculously heals Sam's hip. Luckily for me...I believe in miracles. Sam may improve his gait over time but he will continue to have a physical disability. The external fixator helped but will not completely alleviate the effect of Perthes. Sam will continue to need a walker, Sam will continue to need a wheelchair and sometime in the future Sam will need either a hip fusion or hip replacement. It is a matter of time and how long it takes the hip to break down or become too painful again. This surgery bought us more time before the next one is required. More time to travel on a family vacation, more time to go on homeschool field trips, more time to work on moving Sam along in his academic goals, more time to wake up and enjoy each and every pain free day...as much as we possibly can. Sam will probably not regain 100% of his mobility, Sam will not run, skip and jump like other 12 year olds. But with all that said...I am still thankful for Dr. Standard and his promise to see things through...I am thankful for Sam's ability to transfer and walk with the walker...I am thankful for the new little bundle of joy that may have changed our appointment but will bless the Standard's lives...I am thankful that Sam's pain has been reduced and he can swim with ease again...I am thankful for more smiles and less tears...and...I...am...thankful...for...more...time!<br />
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When we left our marathon appointment of 4 hours I was at peace, calm and looking forward to what that time...time without surgery, time without rehab, time without narcotic pain medication...would allow us to do. So the next day we got started. We headed to another National Park in our quest to visit them all. This time we drove to Great Falls National Park in Virginia. Record heat in the area was going to make our visit short and sweet but we would see the Great Falls of the Potomac River. I knew right away we made a good decision when the Park Ranger allowed us to enter for free just by mentioning Sam's National Park Pass. Yep, another blessing!!<br />
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Thankfully the overlooks were very easy to get to because pushing Sam in 97 degree weather is never a lot of fun. Out of the 3 overlooks I was thrilled to see that 2 of them were handicap accessible.<br />
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The first overlook gave us a beautiful view of the rapids and if you know Sam...you know he loves anything that resembles a waterfall.<br />
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The view the other direction was just as beautiful. A nice time to stop and thank God for our safe travels.<br />
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The second outlook had this wonderful plexi-glass viewing area for small children or people who use a wheelchair. Sam was mesmerized.<br />
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Sam had a great time watching the kayaker works his way through the rapids.<br />
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The kayak was going upstream...hmmm...facing his challenges, seemed to fit our theme???<br />
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I love taking Sam to the National Parks because it seems to give him peace, thoughtful reflection and always, always a time to enjoy the natural beauty that God created all around us. We also enjoyed driving the Georgetown Scenic Byway.<br />
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Due to the heat we decided to take our next activity inside. Ahhhh...air conditioning another blessing...both to cool us off and since my husband owns a heating and air conditioning business...allow us to take this wonderful trip. We decided to head to the movies for some relaxation, A/C, popcorn, soda and hopefully a great movie. We drove to Hunt Valley upon Amy's recommendation. I explained to Amy that I'm a country girl, live in a rural area and only have one major highway near us. I wanted to go somewhere away from the city where I could park in a parking lot instead of a parking garage and I wouldn't get lost or end up going the wrong way down a one way. I'm pretty sure if you live on the East Coast you have to love highways, expressways...and a lot of them...all seemingly going to some place more crowded. Anywho we arrived at the theater and chuckled that we were the only ones in our theater. We decided to sit in the middle to enjoy all the space.<br />
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Because I normally fly by the seat of my pants, I didn't really plan on a particular time to arrive. We ended up being in the theater 45 minutes before the movie was to start. Popcorn, soda and A/C...not a problem...much better than our last wait which didn't provide us with any food or beverage. We enjoyed the peace and quiet and waited for the movie Planes to begin. Now remember we are in a movie theater at 4:00 on a school day for a PG movie...yep no one came to join us.<br />
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Sam enjoyed being the popcorn bully, offering me a piece or two at a time. When I asked for the bucket I was allowed to take one handful before he requested it back. <br />
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But he was happy and we both could relax.</div>
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However when the movie was supposed to start and we still had this on our screen I had to go to the lobby and ask them to turn the movie on. They forgot that there was anyone in the theater. Once the movie got started Sam loved it.<br />
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The heat remained a factor the next day and Danielle was not feeling very good so I decided to try to take an earlier flight home. When I called Southwest they told me we could get on the 2:00 p.m. flight so we headed to the airport. We dropped off the car and we were thrilled that Budget drove us right to our ticket counter. The thrill ended when the Southwest agent informed me that to change our tickets would be a $400.00 upcharge. Deep breath...I kindly declined since both tickets didn't cost me that much and we decided to wait at the airport (since our rental car was now turned in) until our original flight out at 5:00 p.m. Yep that is 5 hours in the airport. Oh joy!! It was too early to check in our bag so we moved over to the seating area and I noticed a huge amount of security and then it hit me. I was flying out of Washington DC on 9/11...what was I thinking???? These were not your normal police officers...they looked you up and down from head to toe and they wanted you to know that they were looking at you. Of course Sam thought it would be a great time to do some meet and greets which I quickly discouraged but a few couldn't help but smile at him anyway. 1:00 o'clock came around and we were able to check in our bag and now we were off to security. I have mentioned how much I look forward to getting Sam through security and the fact that we were detained for 1 1/2 hours the last time we tried to fly out of Washington DC, haven't I???<br />
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As we headed to security the guard was kind enough to usher us over to the business traveler/employee line because it was shorter. I smiled and thanked him and thought "you may regret that move in the near future". I removed Sam and my shoes, pulled his IPad out, put the back pack in the bin and made it to the walk through scanner. They asked me "Is he able to walk unassisted" I said "No", they asked me to walk through and then the security guard decided to bypass my answer and ask Sam to get up and walk through....as if he would listen to her and just walk through. I tapped her on the shoulder and said "He's not going to come to you, he doesn't know you or trust you". She responded "Well, she can walk through to you". I got stuck on the reference to "she"...honestly what part of looking at Sam makes you feel he's a girl??? I said he will probably grab the side to steady himself, she said "Well, then she will alarm". Again "she"???? Sam stood after a few very loud audible "NO's", now just picture that I am trying to get a child that struggles with auditory directions to stand and walk on an uneven surface while every one in the area turns and stares. Yep, anxiety was hitting Sam and me big time. Sam stood and grabbed on to the side (like I said he would) alarmed and the security guard finally decided we needed to go into the other area of security which is where I wanted to go right away...but what do I know. A second security guard began to push Sam's wheelchair and as Sam was beginning to object I stepped in, got down to Sam's level and explained that I am right behind him, getting our stuff and the security guard will wait for me. Sometimes you just have to make instructions clear to both parties. I gathered our stuff and followed the security guard to the other personal check area. I already knew the security officers line before he said it "we need to call our superiors regarding the proper protocol". Part of me wanted to say "because you have never had someone with special needs come through security before". But when it comes to National Security, especially on 9/11, I cooperate fully. I explained the situation to Sam and told him "No worries, Mom is right here". He was happy to touch the guard's badge and say "Hello" to everyone that came through. About 15 minutes later the "powers to be" come over and the usual questions are asked. "How old is he" "12" "He alarmed?" "Yes, because he touched the side of the walk through." "Are you travelling alone?" "Yes, just Sam and I" "He is your son?" "Yes, I am his mother" "Has he alarmed before" "Yes, he has metal in his hip" "Please wait as we do some further checking. The guard will wand Sam and his wheelchair, are you okay with that?" "Yes, that's fine". They used the pad to check for explosive agents, wanded and I asked "Do you need him to transfer to a regular chair so you can check the wheelchair further." The security guard told me "You are very patient and cooperative, thank you." He went on to tell me about someone else with a child with special needs that came through in a similar situation and was really rude. I explained that I am patient because Sam needs me to be and I am cooperative because I know safety is their #1 concern. I believe our children need to be checked out the same as any other traveller. I know some parents will not agree, but in my mind if it becomes easier to get a child with special needs through a United States airport it opens up the chance of our children becoming targets for terrorists. After some more phone calls and checks we were released to travel on to our gate. Sam and I thanked them and moved on.<br />
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I found some gluten free items Sam could munch on and we settled in. I was happy to see handicap accessible seating which allows more room for a wheelchair, walker and equipment without blocking everyone's path. I was thankful Sam's IPad was fully charged and I had something to read along with me. As we got closer to our departure time I decided to gate check Sam's wheelchair and walker. Why you have to do this process when you get your boarding pass and again at the gate seems kinda crazy to me but we comply. I was amazed at how many people tried to skip in front of us in line...funny...you don't see the boy in the wheelchair??? Hmmm...made me wonder how people that are wheelchair bound make it through the airport on their own. We got everything tagged again and headed back to our seats to find that the airport was really busy now and 3 well dressed business men had taken over the handicap seating. I took a deep breath and decided to push the envelope. I pulled up to the side and asked the gentleman on the end if he could move over so we could fit Sam's wheelchair without blocking the aisle. He looked at me annoyed but picked up his things and moved. I brushed it off and once again settled in. The displaced businessman continued to watch us and it wasn't until a woman in a wheelchair came up and said "I'm so happy they have handicap accessible seating here, it makes travelling easier." The man finally got up, looked at the back of the seating, saw the handicap access symbol and quickly moved away from us. Another teaching moment...completed. Now those who know me, know I have a very sarcastic sense of humor...don't think for a moment that a comeback did not enter my mind such as "I'm sorry I didn't notice your handicap, is it cognitive??" or "I imagine carrying that suit bag has fatigued you way beyond my pushing this wheelchair, while carrying the walker and lugging a backpack?"...by grace alone...I kept my mouth shut and simply smiled.<br />
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As we got closer to departure I noticed the lack of a plane at the gate. The announcement came shortly after that our plane was in route but we would probably have an hour delay. Deep breath...okay, we can do this. I began to think about how blessed I am that I didn't bring Jeff or Ben on this trip, neither of them are known for their patience or ability to "go with the flow". There is a good chance one or both would have been arrested after the hospital wait but definitely, DEFINITELY after spending 6 hours in the airport with Sam.<br />
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When our plane did arrive I decided not to take the chance of leaving it up to the airline to determine the boarding policy. Sometimes they allow those that need additional time/help to board first, sometimes they cater to their first class travellers and sometimes they stick firmly to a zone boarding. After spending 6 hours in the airport <b>I knew</b> we were boarding first. Sam's hip was going to be sore and stiff from sitting for an extended time. When he got up we had a limited amount of time to take steps before he would need to sit down. As I said before we have been on flights where 1st class goes on first and then blocks the aisle...mistakenly thinking Sam will stand and wait patiently...and instead he has yelled "MOVE" and pushed them out of the way. Yep, that makes us really popular. Other times I have had people put their carry on in the aisle or extend their feet or other body part...with pretty much the same result as before. So this time, I was taking charge and thankfully the gate agent agreed with me.<br />
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We settled into our seats and watched everyone else board. The door was closed....we pushed off from the gate...and we stopped. No, no, no!!! After 15 minutes the captain came on informing us that we had been temporarily grounded due to weather to our west and would remain for approximately a half hour or so. Sam grabbed his IPad (which thankfully still had a 40% charge), I grabbed my phone and asked Danielle if planes were crashing into buildings since I had already asked how the weather was???? After 1/2 hour we were advised to put away our devices and we began to move toward the runway. Sam was already starting his "1, 2, 3....go", we were the next to the runway....when...the pilot suddenly turned the plane around. NNNOOOOOO!!! Again our captain came on to let us know that we were next but they have again temporarily grounded all aircraft for approximately 20 minutes. He went on to say that they have turned off one of the engines to conserve fuel use. It was at this point I could not hide my reaction, I chuckled and said "Well that's reassuring, we may run out of fuel now." As if he heard me he corrected himself and reassured us that we had more than enough fuel to make the trip. GOSH...THANKS!<br />
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I texted Danielle to let her know the new information and my husband thought it would be great to have her text me that I should remain calm, positive, patient and easy going...to which I responded "Bite me". Leave it to Jeff to bring out the best in me.<br />
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20 minutes later we were finally in the air and I couldn't wait to land in Milwaukee. After waiting for everyone to deplane we were told Sam's wheelchair was at the gate and we could get off. Another small, small pet peeve...would it be too much to ask that the wheelchair be opened and ready to sit in??? Deep breath and feeling blessed to be home. We picked up our bag, made it on and off not one but two elevators in pack mule mode and found our car. Yes, there may have been a short audible scream upon finally sitting in my car with the door closed to which Sam replied "Mom stop it, go home".<br />
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I would love to tell you that the story, the drama which seems to be my life, ends there...but no...that would not be my life. Danielle due to her diagnosis of Mono is attempting to attend school half days, morning one day, afternoon the next before she comes home for a 5 hour nap. On Friday she asked me to drive her to school in the morning, as we are driving she tells me that she has a rash on her arm that is really itchy and shows me a little patch on her arm. I asked her if she used any new lotions or soaps but she hasn't. I drop her off at school and return home to start working with Sam. We just get started when she calls me on my cell and says "You need to pick me up right now". I said "Now what?". The rash had spread to both arms across her chest and was moving up her neck. I loaded Sam and headed to pick her up. By the time she got into the car the rash had started to move down her stomach and across her back. I realized she was having an allergic reaction to something so rushed to Walgreens and bought a water bottle and Benedryl. I had her take two tablets and hoped we had slowed it down. Through out the day Danielle began to complain more and more about the itchiness and pain soooo....I called her doctor who advised just to continue using Benedryl. By 6:00 she couldn't stand it any longer and was covered over 90% of her body. These pictures are from when she came home from school, it got much, much worse but taking pictures at that point was not an option.<br />
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Sooooo....we headed to the Walk In Clinic after Aunt Wendy rushed over to watch Sam. By this time, the small red dots had become angry looking and at 16 years old Danielle was appropriately freaking out a bit. The doctor took one look at Danielle and said "Have you taken an antibiotic recently". We explained that Danielle had been diagnosed with Mono and a bladder infection and had just finished taking 7 days of Cephalexin. He told us that she was having an allergic reaction to the antibiotic and could never take it again without the possibility of a life threatening reaction. Oh joy! He prescribed a course of steroids and explained that this was probably going to get a bit worse before it got better. Picture Danielle and I with that "deer in the headlight" look. Honestly....worse??? We picked up her prescription and some pizza and headed home. She immediately took 6 steroid tablets and 2 Benadryl and I had resigned myself to understand that this was going to be a llloooonnnnggggg night. To say Danielle was miserable is a huge understatement. At 11:00 p.m. she was sobbing in her room in complete agony. I remember reading and hearing the doctor say that cooling a person can help. I opened the windows in her room and then I found our large cooler filled it with as cold of water as I could and dumped all our ice from the freezer in it. I called Danielle downstairs and said "All we can do is try and see if it helps". Danielle's arms were the worst, so she kneeled on the kitchen floor and submersed both her arms up to her armpits in the ice-filled cooler. It stung terribly but I knew when she didn't pull out that it was beginning to work. What I wasn't prepared for was how long she would stay in the ice water...like 15 minutes. She came out bright red but she had stopped crying and she seemed to have found some relief. The icing continued throughout the night. Danielle slept at the most for an hour and a half. Now keep in mind she also has Mono so by Saturday morning she is again miserable...desperately needing sleep but unable to sleep because of the itching and pain. On Saturday night the rash was still bad but it appeared to be receding. She finally slept on Saturday night and today she is feeling much better, very tired...but better.<br />
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Sooooo this life...has been beyond crazy at times and I am still very much riding that rollercoaster as I come into the new week. Along with everything going on I still more than ever miss my Mom, I miss my best friend and honestly the challenges that face me now could and should put me over the edge...and yet I am calm, I am positive, I am thankful and all of this I owe to the grace of God. I'm not strong enough to weather this tide, so when I went to church this morning and the Epistle lesson was 1 Timothy 1:12-17 "I thank him who has given me strength, Christ Jesus our Lord..." I can only say "AMEN" and thank you for everything...through grace alone...I carry on.<br />
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com2tag:blogger.com,1999:blog-7434662234064169811.post-972931698124925092013-09-05T23:42:00.000-06:002013-09-05T23:42:33.620-06:00Sam Moments<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">On my Facebook page I have often posted Sam moments (a brief glimpse into what life with Sam is like). I thought I would share this here too. ENJOY!!</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sept. 15, 2009: Okay funny story for the day. After a kinda unproductive homeschool day I thought we would finish off with math, just to really end my day on a great note. You see, Sam has a love/hate relationship with numbers and math, okay let’s just sa</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">y there is no relationship. I brought out his dot cards but realized I must have missed a few when I grabbed them, so I left the room and when I returned two of the cards were ripped in pieces. I asked Sam, “What happened?”….are you ready…are you sure??? He looked at Buddy (our wonderful golden doodle) and said, “Naughty dog”. The nerve of this child but I did have to laugh. Our dog does tends to pull things out of the garbage that contained food when we are away and leaves a shredded mess on the floor, which of course causes me to say, “Buddy, naughty dog” and Sam helps me clean it up. But what do you think the chances are that Buddy would not shred but rip in pieces two cards??? Ooohhh, that boy!!</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">April 15, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sooo, I take a shower and Sam wakes up and decides chocolate ice cream is the perfect breakfast. Ya gotta love this kid!</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">May 24, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Okay, is it just me or do others find it strange and yet humorous that when Sam reads the word "Who" he instead says owl???</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">July 11, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">A Sam Moment:</span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> </span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Sam, 2+2= "</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "4"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Sam, 5+5= "</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam hesitates, so I hold up my hands "Sam, 5+5= "</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Both hands!"</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">July 11, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Another Sam Moment:</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Sam, where is your hat?" As I frantically look for the hat with the hearing aid.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "What??"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Where is your hat?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "What??"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "WHERE IS YOUR HAT?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Not here" as he points to his head.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Really, I would have never guessed."</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Bless you, Mommy." Yep, that's my boy!</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">July 21, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">More Sam moments:</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Mom, Netflix??"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "No Sam, first we read our book"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "NO book"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "No Netflix"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Okay, ready"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">I open the book to the first page and Sam isn't really wanting to read.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">He looks at me and smiles and then comes out with this line.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">"Mom, you bootiful"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Thank you, nice try...but we are still reading the book"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: Long sigh, "Okay ready".</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">What a character???</span><br />
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<span style="color: #37404e; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 18px;">September 1, 2011: </span></span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">I am happy to say that Mayer Academy with enrollment of 1 student had a great day today! Both teacher and student had fun and learned at the same time. Sam's memorable moments for today: One occurred while we were doing math with the talking calculator and he kept telling it to be quiet. Then we took a walk with Buddy and talked about everything we saw which included a deer, turkey, and hawk. When we got back I asked him what did we see on our walk? His answer: "Buddy pooped". He's such a boy!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">December 1, 2011: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment...every year at this time Pamper's runs their "Peace on Earth" commercial with the sleeping babies and every year Sam will stop whatever he is doing or saying, including getting up from the table and leaving a meal to watch and sing to this commercial. One of my many Christmas blessings!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">January 11, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">A melt your heart moment: Sam wakes up early and Ben comes down the stairs to get ready to go to school. Sam: "Hi Brother Ben", Ben: "Hi Brother Sam", Sam: "What you doing?" Ben: "I'm getting ready for school Sam". Sam: "Ben, wait...wait Ben". Sam walks into the living room with a smile from ear to ear. Sam: "Hi Brother Ben". Ben: "Hi Brother Sam". Ben: "I have to go Sam". Sam: "Bye Ben, See Ya". Ben in his 16 year old soft compassionate voice that he only saves for Sam: "Bye, Sam. I love you buddy! Have a good day". Sam: "I love you" "Bye, see ya, later" "Good day, Ben!" And a good day had indeed begun!!!</span></div>
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<span style="color: #37404e; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 18px;">January 30, 2012: </span></span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">This morning Sam came into my room and said "Good Morning, Mommy". I said "Good Morning, Sam". Sam noticed I had my hand over my eyes so he said "What wong Mommy?". I told him I had a migraine. Sam looked at me confused, looked outside and then said "Mom, no rain...snow. It winter" Only Sam could make me laugh when my head hurt so bad. Love you Sammy!!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">March 2, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Felt bad for Sam that he couldn't go out and enjoy the snow because his hip has been so bad this week. So Buddy and I went out and I had Jeff bring Sam to the window to see the snowman, snow rabbit and snow teddy bear I made for him on the deck (before their arms started to fall off) and then we had a one sided snow ball fight at the window. He laughed the hardest when I began to throw snowballs at Buddy and Buddy flipped snow right back at me. Jeff opened the deck door and made a snowball for Sam that he could throw at me. There is always a way to be included.</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">April 29, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: Last night in church Sam walked in with his walker and chose to sit in one of the chairs with arms. I thought good choice. He moved his walker in from the aisle and patted it. I was sitting next to him and leaned my elbow on one of the arms he immediately pushed me out of the way, a little territorial I thought and I looked at him and smiled. He began to copy my actions, if I cross</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ed my arms he crossed his arms, if I folded my hands he folded his hands, if I sang he sang...this continued to my amusement. When we went up to communion he blessed himself and said "In name of Father, Son and Howey Ghost, Amen". At one point during the service, I'm not sure if an angel was telling him jokes but he had a little giggle outburst which I then tapped him on the shoulder and told him to be quiet and listen. He then looked at pastor and then looked at me and rolled his eyes. I mean really, teenagerish rolled his eyes. He's the best!</span></div>
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">April 30, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam chuckle: Always working with Sam on self care skills. Our new skill was the art of putting on deodorant. First you had to have the right kind, same as Brother Ben which means it has to be Axe otherwise no go. Soooo...then I thought I would demonstrate once and talk him through the second application. After shower so no hearing aid yet. I told him to apply the deodorant to his armpit...possibly a translation error. Sam is now wearing deodorant under his arm from his elbow to his waist. I think he's covered!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">May 4, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: Today as we drove into town we passed the Power Company and I told Sam "Power Company". As usual he repeated the last word "Company". I repeated myself and he said "Power Company" but what happened next really amazed me. He said "legtricity" and I said "electricity?". He said "Yeah, turn lights on". Just when you think all that homeschooling might not be getting through he gives me a little spark!!</span></div>
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<span style="color: #37404e; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 18px;">June 6, 2012: </span></span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Well, Sam must have heard that it is summer vacation because today at speech he told his therapist that he had to go to the bathroom. But when I brought his wheelchair in he climbed in and said "Bye Sue, Mom go car, now". Then when we got home and it was time to do his math on the Ipad he said "I do it Mom" and as I walked into the next room I could hear the theme from Temple Run begin to play. B</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ut my all time favorite antic of the day was when he gladly took his chewable vitamin, placed it in his mouth and then proceeded to spit it out and give it to Buddy because he thought I wasn't looking. Well, it appears Sam is following nicely in his brothers footsteps and Buddy has received his complete daily nutritional allowance. Ahhh, a day in the life of raising a child that is viewed as cognitively challenged...I think NOT!!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 9, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Samisms: I love when Sam refers to his sister as "my Danielle" or his brother as "Brother Ben". Tonight he told me "Love you Mom, my heart" which in Sam's world means "I love you Mom with all my heart". I told him "I love you to the moon and back". Sam's response, "No Mom, I right here". Oh man, I love that kid!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 27, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam Moment: Tonight at dinner Sam said the dinner prayer and then did the exclusive to Sam yell "Everybody eating". As we are eating Sam must have decided that Uncle Dave should be joining us again for dinner so he says, "Brother Ben, Sam call Uncle Dave". Ben gives Sam his phone while Jeff who is sitting right next to Sam decides to use his phone to call Sam. Ben had the phone on vibrate whic</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">h caused Sam to drop it on the table (ahhh love those sensory issues). Ben pressed the talk button and this was the conversation:</span></div>
<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />Sam: Hellllloooo...Uncle Dave.<br />Jeff: Hi Sam!<br />Sam: Dave, Sam eating.<br />Jeff: What are you eating?<br />Sam: Supper<br />Jeff: What's for supper?<br />Sam: Supper<br />(at this point Ben is in tears laughing over the fact that Sam doesn't realize he is talking to Jeff who is sitting right next to him)<br />Sam: Uncle Dave, what you doing?<br />Jeff: Talking on the phone.<br />Sam: Me too and Daddy. Bye Uncle Dave!<br />He hands the phone back to Ben and begins to laugh with all of us that deep belly laugh that no one can resist. I never forget to laugh or smile with Sam around!!</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">First, Ben and Danielle get up for school and begin to argue. I have to step in when Ben's language goes south. Sam sleeping in his room wakes us when he hears the back door slam. A little sleepy he says, "Ben stop! No yell! Good Mornin, be good. Sam sleep." And with that he laid back down and</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> went to sleep. Not sure if he was really awake during that but as I watched him drift off to sleep his stern look returned to a smile.<br /><br />As I got dressed after my shower I heard Sam yell "Good Mornin Mommy". With my hair messed up and wet I came over to accept the hug Sam was offering from his bed and I wished him a "Good Mornin". He smiled and looked outside and said "Mommy, bootiful day". I smiled and told him every day was beautiful with him. He asked for another hug and said "Love you Mommy, my heart" which I know means "I love you Mommy with all my heart". I told him "I love you too Sam, with all my heart". Sam looked up and smiled at me and said "Mommy bootiful". I smiled and chuckled and said "Thank you, Sam"...only this little boy would tell me I'm beautiful with my wet hair going in every direction, no make up and still looking half asleep. Sam looked serious again and he said "No Mommy" "Mommy bootiful" and he tapped his hand to his chest. My eyes filled with tears as I understood he was paying me the ultimate compliment...telling me that I was beautiful on the inside. Love this little boy so, so much!!</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Mom, go to Home Depot"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "What do you need from Home Depot?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Soda"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Soda is not good for your tummy"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Okay, go with Daddy"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Yep, he's working the parents. Cognitively delayed...I think not.</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">November 5, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">It melts my heart to watch my 6'2" son get on his knees to hug his brother and tell him "Love you Sammy, I hope you had a great day!"</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">November 13, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam Moment: Soooo...yesterday was chili making day and as most of you know I use most of my day with Sam as teaching moments. Some days are better than others and yesterday was somewhere in between. When I started the chili I wheeled Sam around the kitchen, following functional directions by locating items in the pantry and refrigerator and putting them on the table. He was reluctant to comply</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> at first but we worked through it. Then I gave him the recipe printed in a larger font and asked him to read me the directions.</span></div>
<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />It went something like this.<br />Mom: "Okay Sam, what's first"<br />Sam reading: "Put ground beef in pan and brown"<br />Mom: "Okay, I've got my pan and here's the ground beef. I use the knife to open and put it into the pan." "Hmmmm, I need to stir it..."<br />Sam: "Mom, use spoon"<br />Mom: "Thanks Sam, what would I do without you?"<br /><br />I begin to break apart the meat and stir. Sam quickly gets bored.<br /><br />Sam: "Mom watch Netflix?"<br />Mom: "No Sam, we are making chili together"<br />Sam: "Sam all done"<br />Mom: "Sam, we are just starting"<br />Sam: "Mom watch Netflix please, Mommy Dear?"<br />Mom: "Beautiful talking Sam but no we need to make chili" "Read the next step Sam"<br />Sam: "Cut yunion" (deciphered by mom as onion)<br />Mom: "Okay, here's our onion and I need to cut it with...." (intentional delays and forgetfulness are part of my everyday so Sam can pull out the right speech, engage in the activity and feel the accomplishment of helping me stay on task)<br />Sam: "Mom, use knife"<br />Mom: "Thank you Sam, you are so helpful"<br />Sam: "Mom, all done...watch Netflix?"<br /><br />I quickly realized that I lost Sam's interest after the instruction was read and tried to pull him into the steps further. Giving Sam a plastic knife and a piece of onion I told him to help me cut the onion. This was met with much resistance since the onion smells and is kinda slippery. A little hand over hand got him started but he quickly went from skilled cutting to a chopping action. (Not much different than what Ben would choose to do). We put our onion into the pot and I asked him to read the next direction.<br /><br />Sam: "Chop green pepper"<br />Mom: "We have this pepper instead, it's....."<br />Sam: "Um, Mom...it's red"<br />Mom: "Yeah, that will work" "Hmmm...I need to cut it"<br />Sam: "Mom knife...focus"<br />Mom: As I chuckle "Sorry Sam, sometimes I forget" I finish with the pepper.<br />Mom: "Sam, read the next direction"<br />Sam grins from ear to ear and in his best reading voice says:<br />"Sam...go....watch.....Netflix<wbr></wbr><span class="word_break" style="display: inline-block;"></span>"<br />I JUST LOVE THIS KID!!!</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">November 20, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Just because life is not exciting enough...Children's Hospital calls to let me know that they have been able to move Sam's dental appointment up to today. Sam and dentist has not always been the best combination...and today he decided to pull a baby tooth. Letting me know wasn't the problem...it's that awkward moment when I go in to see Sam and he gives me his angry look and says "MOM...OOWWW???</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">" and points to his mouth and I realize that this little man is none to happy with me that I didn't warn him. Soooo...that pretty much sets up the next Sam moment:</span></div>
<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />Sam: Mom, owww...go to McDonalds<br />Mom: Sam, McDonalds isn't good for you<br />Sam: Mom, OOWWW...go to Taco Bell.<br />Mom: Sam, Taco Bell isn't good for you either.<br />The next line floored me.<br />Sam: Mom, you say no ooowww. I OOOWWW. Tooth mouth out, OOWWW...Sam go movie.<br />A promise of Netflix, full access to the remote control and some green tea has indeed calmed the little man down.</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">December 31, 2012: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Eating gingerbread cookies, snuggling with Sam who wouldn't go to sleep and loving his giggles and big smiles. I have been telling Sam that Daddy and I will be taking him to Baltimore to have Dr. Standard make his hip feel better. He always</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> listens intently but doesn't often respond until tonight. He looked at me and said "Mommy, hip hurt". I said "I know your hip hurts but we are going to try to make it better." Sam touched his hip and said "Go to hospital". I told him we would be going soon and I would be with him the whole time. Sam said "Mom, Sam okay...Mom okay?" I told him that he and I would be just fine and we will do this together. He said "Okay Mommy, Sam sleep, stay here". I stroked his hair and watched him slowly close his eyes and open them...checking that I was still there...until they stayed closed and I heard his breathing relax. God answered another prayer...letting me know that Sam was ready!! Good night everyone!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">February 1, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Totally Sam moment to start off your morning...</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">I walk into the living room where Sam is comfortably sitting in the cushy recliner watching Netflix.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Ummm....Mommy?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Yes, Sam"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Ummm...Mommy...hungry"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "What would you like Sam?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "I want ice cream", "I want steak" "I want chips"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">He then points to the kitchen and says "Go, Mommy Dear...go" He then finishes our interaction with a huge smile and chuckle.</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Hmmmm....I think someone is feeling better!!!</span><br />
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June 29, 2013: <span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: I was feeling a little sad tonight so Sam decided to play accident victim to cheer me up. Yeah the child recovering from his 3rd hip surgery manages to get out of his recliner and proceeds to lay spread eagle on the floor in the living room and then begins to groan pathetically. Now Type A mom first has to come running in and have a minor heart attack thinking "OMG, please tell me y</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">ou didn't fall" but then as I listened and saw the smirk on his face I knew what he was up to. I ran to the phone and said "Don't worry Sam I'll call 911" which made him laugh as he began to make his ambulance noise. I said "Oh no, they aren't answering, what should we do". Sam's answer "Call for pizza". How can you be sad with this guy around???</span></div>
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">July 11, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam Moment: This morning while Sam was still asleep I headed outside to water my Earth Box garden and flowers. I came walking in to find Sam with his brace off, fully dressed and using his walker to come into the living room to help me fold laundry. My heart and face smiled thinking how unusual it was to see Sam up and walking and yet what a wonderful miracle!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">July 31, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: Sooo...today this amazing, strong, unshakeable little guy walked with his walker into and out of the YMCA to go swimming. For most people that would be a non event but for Sam, rehabbing from his 3rd hip surgery...IT WAS AMAZING!!!</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 5, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Classic Sam Moment: Sooooo...today we are at Children's Hospital to get Sam fitted for yet another torture device...um no scratch that....orthopedic brace and as we are heading to the elevators I notice a group of college age girls, smiling</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> and laughing about something or someone who is in the ENT office. We get into our elevator and just as the door is closing, the equivalent of a long dark haired Fabio walks into the elevator with his hair flowing, silk shirt, tight jeans and cowboy boots. As he steps in I hear one of the girls yell "Heeeyyy" and another one whistles which causes the greek god to stop and wave, then turn and smile as he walks into the elevator. Just in time for Sam to turn to him and say "HI LADY!" </span></div>
<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />Ouch...that kinda took him out at the knees. I told Sam that he had long hair but he's a guy...to which...he said "Thank You" and I said "Yep, no problem". Yep, just another day in the life with Sam.</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 15, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: On our way to the doctor today, Sam began to negotiate the terms of his appointment.</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Uh Mama"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Yes Sam"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Uh Mama, where you going?"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "To see Dr. Steinert"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Dr. Steinert, yes" </span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">At this point Sam begins to think out loud:</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Hmmm...Dr. Steinert...Sam go...office...good boy...go McDonalds...YES"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: "Um Mama"</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: "Yes Sam"</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"><br />Sam: "Sam good, go McDonalds...please" (said in the sweetest voice possible)<br />Mom: "Sam, McDonalds isn't good for you"<br />Sam: "Pizza?"<br />Mom: "No, you don't need pizza, how about a salad?"<br />Sam: "Salad no...chicken, french fries please?"<br />Mom: "I think we should eat at home"<br />Sam: "No home...Sam hungry, go eat"<br />Mom: "Sam, you are always hungry"<br />Sam: At this point he gets distracted by a Fed Ex truck (kinda like there goes a chicken) and the conversation switches...or so I thought.<br />Sam: "Mom Fed Ex truck"<br />Mom: "Yep, he's bringing someone a package"<br />Sam: "Yep, Sam...package french fries"<br />Ahhhh...the joy of Sam and his never ending quest for food!</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 16, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment:</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">I always wondered if it bothered Sam when he said "Hello" to people and they did not respond.</span><br />
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">So today as we were at Children's Hospital for yet another blood draw Sam as usual greeted everyone we passed. Good day, all of them</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;"> smiled and returned a "hello". Then we got into the lab area and a woman was in the waiting area. Sam said "Hello" and she turned away and acted as if she didn't hear him. Sam said "Hello Lady" and the woman began to look in her purse but did not respond. Sam got called in and after a few yells and a few "I'm sorry" he made it through the blood draw thanked the technician and told her "have a good day" and we headed out.<br /><br />The lady was still in the waiting room. Sam raised his voice and said "Hey Lady" and then crossed his arms which is sign language for "hug".<br /><br />Just another amazing moment with a little man that continues to teach me more than I could ever teach him.</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">August 19, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam Moment: Obviously someone has been spending a lot of time with their sister this summer because that is the only way I can explain the following interaction:</span></div>
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: Did you have fun with Isabella today?</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam: Yes, Bella home.</span><br />
<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Mom: And </span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Uncle Randy took you to the pool.<br />Sam: Yes, swimming fun.<br />Mom: On Wednesday we need to pick up your library books and finish setting up the room so you and I can have fun and learn together.<br />Which when I turned to look at Sam I caught the hand movement and heard:<br />Sam: "Blah, blah, blah"<br />Part of me was impressed by the beautiful "bl" blend I heard, another part of me was impressed with the proper use of the expression and part of me wanted to ring his little neck for being sassy.<br />Thanks <a data-hovercard="/ajax/hovercard/user.php?id=1325193493&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/danielle.mayer.14?directed_target_id=0" style="color: #3b5998; cursor: pointer; text-decoration: none;">Danielle Mayer</a>!!</span><br />
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<span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">September 4, 2013: </span><span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Sam moment: Sooooo....you never know when the need to pray is going to strike you....as demonstrated by Sam during the middle of his shower this morning. As I was washing his hair, he suddenly put his hands together and said "Mom, pray". I said "Oh, okay" and assumed the position with my shampoo filled hands. Sam's prayer: "God, Sam no school today...Amen".</span></div>
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<span style="background-color: white; color: #37404e; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">Only Sam would ask for divine assistance to get out of his home program. Good thing we covered "Prayer 101" in our "Yes, it's on" school program today...and no I did not get struck by lightening. Ahhhh...another Mayer boy that just LOVES school.</span>suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com1tag:blogger.com,1999:blog-7434662234064169811.post-63174518067983042402013-08-10T12:04:00.000-06:002013-08-10T12:09:09.235-06:00Putting Things Into Perspective!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDHpeNuU9w0YWz3JjtIrrdB0oFaoKlybrTocB_TRq0GSmSL0D1s1r9mKzkbJx-l4zh7_E39nT1yz9gx-3o_7BKyOe7efCjdOweyKuGukGuC-FhMpJhszbTMqVK5hyCjbziOKjy70sCQwk/s1600/difference.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="273" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDHpeNuU9w0YWz3JjtIrrdB0oFaoKlybrTocB_TRq0GSmSL0D1s1r9mKzkbJx-l4zh7_E39nT1yz9gx-3o_7BKyOe7efCjdOweyKuGukGuC-FhMpJhszbTMqVK5hyCjbziOKjy70sCQwk/s400/difference.jpg" width="400" /></a></div>
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I'm not sure if this is going to be a popular post, but then again I have always promised to be honest and to share the good, bad and ugly with those who choose to read about my journey with Sam. And those last four words are what is really important "my journey with Sam". I write about my experience, my child, and my ever changing perceptions of raising a child with multiple special needs.<br />
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When Sam was first born and we received the diagnosis of Down syndrome I did my research and read the books which sort of depressed me and then I moved on to blogs or at that time emails, stories and sites that talked about all that a child with Down syndrome was capable of...this diagnosis was not the end of the world. I became empowered and when I found NACD I found a mentor Jenny Marrs and her wonderful and amazing son John. Now keep in mind that before I had found NACD Sam had suffered a brain injury from oxygen deprivation but reading about children with Down syndrome and brain injury that excelled with neurodevelopmental programs spurred me on. I wanted that super child, I wanted that child that was going to beat the odds and everyone was going to be talking about. I hated when someone would talk about Down syndrome and high functioning or low functioning...none of that mattered...what mattered was how you worked with them...right??? And to be honest...at that point in our journey...I needed that hope, that challenge, that push to get involved, to jump in, to really get to know Sam. I loved the interaction with my evaluator, honestly I valued their opinion over most of the other professionals we worked with because they were looking at Sam from head to toe, they were looking at our available resources and manpower and they were devising a plan for continued improvement with what we had to work with.<br />
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When our Wisconsin chapter first started I often helped with the evaluation process and I saw children come in with Down syndrome that were younger than Sam but they were talking, walking and meeting milestones so much sooner than Sam. I was amazed by these children and loved to see them excel...but I was also envious of strides that seem to come to them so easily, language that flowed with little to no effort, fine motor and gross motor skills that I would die for. The parents would talk to me about their concerns and worries and often I would think but are you seeing what they are doing, are you not amazed by the milestones met? Hmmm...but wasn't I also guilty of this very same thing? Focusing on what Sam couldn't do instead of what he could do and how far he has come? <br />
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It was around this time I had a meeting with our pastor and as we talked he shared with me that often times when he finishes a service he has mixed reactions from congregation members. Some are happy and then some are thinking he is talking about them and they don't appreciate his reference or opinion on their situation even though he never had them in mind when he created the sermon. It was one of those "light bulb moments" when things in your life start to swirl around and make sense. I'm pretty sure that is when God steps in and starts to work on your life. I had two perceptions that seemed to run around in my mind and I'll be honest I'm not proud of either one of them. One was that all those super kids were just really super high functioning and life was easier for them, I could compare this to the difference a parent experiences when they have a typical child or a child with special needs. Some kids are easy and some require a ton of work. I was just beginning to touch on the real issue.<br />
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On the other side I often read on the listserve and even have expressed myself that some parents just don't work or put in enough time with their children and therefore they are low functioning. They aren't trying diets or supplements or neurodevelopmental programs...they are expecting the therapists and schools to get their child where they need to be. Hmmm....was I walking in their shoes, did I know what challenges they faced in their lives??? I am also guilty of wanting the quick fix, the supplement or combination that will make life with Sam easier and allow him to excel beyond my dreams. I would read on the listserve how this supplement or that protocol is doing wonders for a child...and then I would try it with Sam....and his system would react negatively...and I again would feel like a failure. Why is that child excelling and mine is not? I would become inwardly cynical wondering how a doctor, professional or parent is benefiting from pushing a protocol. Like I said I'm not proud of my thoughts or reactions.<br />
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Now before you think I am trashing supplements, protocols, schools or neurodevelopmental programs I want to stop you and reassure you that is not my intention. I admire those who are breaking down the barriers, doing the research, striving to make a positive change in the lives of people with Down syndrome. Without warrior parents we would not have our children at home, in school or receiving proper medical care. So where am I going with this??<br />
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I don't think I'm alone in the struggle of keeping a proper perspective on my journey with Sam. Over the years I have changed my perspective of the super kids. I delight in hearing the stories of those that have achieved and excelled but I think we all need to look at each and every one of our own children, look at where they started and how far they have come and realize that they are super kids in their own rite. Sam has faced more challenges than most, Down syndrome, brain injury, apraxia, aphasia, respiratory/immune system issues, bi-lateral hearing loss, hip dysplasia and Perthes and yet I can truly say he amazes me. Are we reaching all the milestones that I thought we would when he was a baby? I'm going to answer...not yet. I think we all have to continue to try, to hope, to move forward and even if your child isn't where you always thought they would get to, acknowledge where they are at, celebrate what they have accomplished and enjoy them for whom they have become.<br />
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As for low functioning, high functioning...as a parent of an older child (almost 13) I believe we are all unique and our challenges are our own. Sam is a super kid in my mind but can he do what the super kids we all hear about are able to do...not yet. But from my own experience and what we have done with Sam I know that you can work super hard with a child, give them a wealth of experiences, supplement, obtain the best medical care possible and yet they will not meet up to someone's expectations. The important thing is that when you put your head on your pillow each night you know you did what was best for your child and your family. Also keep in mind that when something someone has said bothers you, is it because you have the same doubt, or is it because you needed that extra push or is it God's way of saying work harder and set your expectations higher? There are lessons to be learned in both good times and bad.<br />
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Another part of this balancing act with Sam is embracing difference. It is something both Ben and Sam taught me. That just because someone looks different, learns different, talks different...it is not wrong, it is just different. There is a balancing act we do as parents of typical and children with special needs to help them reach their full potential. Over the years I have learned to concentrate on the strengths, work tenderly on the weaknesses but always let my children know they are amazing. Self esteem is the hardest thing to regain when it has been lost.<br />
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Lastly...give yourself a break. None of us is perfect, we all have our quirks, imperfections and challenges...just like our kiddos. Take care of yourself, love those perfectly imperfect children, see them through a fresh set of eyes and work on maintaining the balance of what we want with what we have.<br />
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Have a great weekend!!<br />
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<br />suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com12tag:blogger.com,1999:blog-7434662234064169811.post-81608174924385230522013-08-04T11:40:00.000-06:002013-08-04T11:40:28.587-06:00When It Rains, It Pours!!! NAET, Road Trip, Lingraphica Speech Device, Audiology, PT, OT, Speech...I have had a lot of inquiries and people checking up on why I haven't been blogging. I promise you it is not a lack of topics or things to report but instead...lack of time. Sometimes life just gets so hectic and everything seems to happen at once and you feel as if you are being pulled into 20 different directions. I have been riding a rollercoaster of grief as I continue to come to terms with the loss of my Mom and my best friend. I have had to refocus on both Sam and my health needs, physically and mentally which meant more doctor appointments than normal and a renewed commitment to taking some much needed breaks, taking some long walks and praying for guidance, resilience and patience.<br />
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During the 4 months of Sam's external fixator and the loss of my Mom I noticed that I wasn't feeling very good. I know stress can do terrible things to your body and I was pretty sure I was in trouble. I was beyond tired. I went to sleep tired and I woke up tired and yet I had difficulty falling asleep or staying asleep. I noticed my hair was thinning first in the front and then in all areas. I also had an inability to stay focused on something for any length of time. I would start something and never finish or I would think about all the things I needed to do but didn't ever seem to get moving on them. I felt bloated all the time (some days I would have swore I looked like I was 6 months into a pregnancy) and noticed that I had gained more weight in my midsection. I wanted to eat more at night than anytime during the day. I often woke up with my heart racing or feeling jittery. I was getting sick and catching things more and more easily, often times easier than Sam (who has a weakened immune system). I would often feel overwhelmed by simple day to day tasks and I had difficulty thinking things through. My therapy of writing which normally comes to me without much effort was tedious and I didn't seem to be able to write from my heart as effortlessly as I had in the past.<br />
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I knew if I went to a traditional doctor and told them what had been happening in my life, it was likely I would hear that I was suffering from depression, anxiety, maybe a thyroid issue or something like chronic fatigue syndrome. I was surprised to see my blood pressure much lower than what I would normally see during stressful times. A good friend of mine had told me about a NAET doctor that also did muscle testing along with sensitivity testing. I chose to go see this doctor while Sam still had the external fixator and we were struggling with keeping the pins sites stable. Sam's body just didn't seem to like the external fixator and was throwing everything at it it could including black flesh, excessive scar tissue, over healing, collapse, granulation tissue, granulomas and just plain looking bad. I made progress with Medihoney but could never quite get them looking stable. Both Sam and my medical issues changed when we met Dr. Hoan-Vu Nguyen, whom we refer to as Dr. Vu.<br />
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As I explained in a previous post: <a href="http://www.naet.com/Patients/whatsnaet.aspx" style="background-color: white; color: #1b703a; font-family: Georgia, serif; font-size: 13px; line-height: 20.796875px; text-decoration: none;">NAET</a><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20.796875px;"> is considered a journey to better health. I have long felt that most medical professionals are taught to look for and treat symptoms rather than to look further to find their causes. You can click on the NAET link at the beginning of this paragraph to learn more. The process uses a computer program and analyzes through the central nervous system. Sam was found to have the following sensitivities: RNA, Vitamin D, food coloring, soy, selenium and magnesium. Through muscle testing the doctor figured out his pituitary gland was not functioning correctly which would make sense since Sam was recently diagnosed as hypothyroid and the pituitary gland stimulates the hormones for the thyroid. Hmmm...we knew Sam had a soy allergy and Vitamin D makes sense since he has always had a deficiency in this area and now we learned his body didn't know how to use Vitamin D properly. Vitamin D and magnesium are both essential for good bone health. It all kinda makes sense doesn't it. Sam's biggest sensitivity was RNA, </span><b style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">Ribonucleic acid</b><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;"> (</span><b style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">RNA</b><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">) is a ubiquitous family of large biological molecules that perform multiple vital roles in the </span><a href="https://en.wikipedia.org/wiki/Genetic_code" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Genetic code">coding</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, </span><a href="https://en.wikipedia.org/wiki/Translation_(biology)" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Translation (biology)">decoding</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, </span><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Regulatory_RNA" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Regulatory RNA">regulation</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, and </span><a href="https://en.wikipedia.org/wiki/RNA_splicing" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="RNA splicing">expression</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;"> of genes. Together with </span><a href="https://en.wikipedia.org/wiki/DNA" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="DNA">DNA</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, RNA comprises the </span><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Nucleic_acids" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Nucleic acids">nucleic acids</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, which, along with </span><a href="https://en.wikipedia.org/wiki/Protein" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Protein">proteins</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">, constitute the three major </span><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Macromolecules" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Macromolecules">macromolecules</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;"> essential for all known forms of </span><a href="https://en.wikipedia.org/wiki/Life" style="background-color: white; background-image: none; color: #0b0080; font-family: sans-serif; font-size: 13px; line-height: 19.1875px; text-decoration: none;" title="Life">life</a><span style="background-color: white; color: #333333; font-family: sans-serif; font-size: 13px; line-height: 19.1875px;">. </span><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20.796875px;">Seems like a pretty important process that a person should not have a sensitivity or issue with.</span><br />
<br style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20.796875px;" /><span style="background-color: white; color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20.796875px;">I didn't have any major sensitivities like Sam but I showed a brain/body imbalance, hormone/estrogen issue, minor sensitivity to bacteria, salt, acid and chocolate and through muscle testing my adrenal system was no longer working properly. </span>When I did further research all of my symptoms would point to adrenal fatigue or failure. Instead of going on an anti-depressant or anxiety medication or just treating my thyroid, Dr. Vu got to the core of my problem. Along with correcting my brain/body imbalance and hormone issue I began to take Standard Process supplements for my adrenal system. I noticed a difference shortly after taking them, like waking up and actually feeling rested. As I have continued to treat my adrenal gland I have noticed that I have more energy, can stay on task and my normally busy schedule does not seem so overwhelming. As I began to take the supplements I noticed I felt nauseous at times and brought that up to Dr. Vu, after further testing he suggested a digestive helper. To treat my adrenal system I began taking Standard Process <a href="https://www.standardprocess.com/MediHerb-Document-Library/Brochures/adrenalcomplexL0621.pdf">Adrenal Complex</a>, <a href="http://www.standardprocess.com/Standard-Process-Document-Library/Product-Detail-Sheets/immuplex4935.pdf">Immuplex</a>, <a href="https://www.standardprocess.com/Standard-Process-Document-Library/Product-Detail-Sheets/drenatrophinpmg3725.pdf">Drenatrophin PMG</a> and <a href="http://www.standardprocess.com/Standard-Process-Document-Library/Product-Detail-Sheets/zypan8475">Zypan</a> for digestive help. You can click on each of them to learn more about the supplement and what it helps to support.<div>
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I feel better and find myself making better health and dietary choices. I am exercising again, drinking more water, cleaning out my house and closets without feeling fatigued, blogging and have stayed healthy since starting these supplements. Sam is off his thyroid medication and we will be doing blood tests to see what his thyroid and Vitamin D levels now look like. He is moving through his rehab process and no longer takes any pain medication for his hip, this is remarkable after having been on narcotic pain medications for the last 6 months.</div>
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Sam is walking with his walker throughout the house and only uses the wheelchair for distances outside our home. Here is another recent accomplishment:</div>
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This summer we took another road trip, this one to regroup, reconnect and relax after a very hectic year of medical issues and the loss of my Mom. I took my Dad, sister, Danielle, Isabella (Danielle's friend) and Sam to North Carolina. We had a great time and enjoyed our time together. The trip was in June while Sam was only 4 weeks out from his third hip surgery so he was pretty much wheel chair bound at that time but the pool was wonderful for his rehab and the ocean always helps lift his spirits. Here is the beautiful home we rented for the week in Duck, North Carolina.</div>
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The girls and Sam loved the pool.</div>
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Even Aunt Wendy and my Dad found the trip relaxing!</div>
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Wendy and I took many walks by the ocean.</div>
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The ocean is always calming to me.</div>
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Usually my niece Brooke is on our road trips and always takes a feet picture. This one is for her.</div>
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Sam found the perfect place to relax! </div>
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Being in a wheelchair didn't keep him from enjoying his vacation!</div>
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On one of the few days that it rained Grandpa played cards while Sam worked on a puzzle.</div>
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The girls played a game!</div>
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The ocean walkway was only 5 houses away from us.</div>
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Sam and I would walk down and check everything out in the early evening.</div>
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Sam even got his toes in the sand!! </div>
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I knew sitting at the ocean would bring back memories for my Dad of doing this very same thing with my Mom when they vacationed in Florida. We all shed a few tears but I had told my sister that if we saw a dolphin it meant Mom was there with us.</div>
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And sure enough a dolphin surfaced at least 10 times but only when we took my Dad to the ocean!</div>
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Sam had fun taking pictures with my camera!</div>
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He even got Grandpa to smile through his tears.</div>
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AND SAM LOVED THE POOL! </div>
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He spent a lot of time under water!</div>
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He also like the hot tub! Good to soothe the hip after all that swimming and diving.</div>
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Sam and I went on walks in the area and always found interesting spots to take a picture!</div>
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And some of the most unusual flowers!</div>
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Sam was so happy to be out and about!</div>
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Sam loved the big surf board! </div>
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Like me, Sam finds the ocean comforting!</div>
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I wondered if he was imagining himself out there surfing!</div>
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Whatever he was thinking...it made him happy!</div>
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The girls enjoyed the pool, the beach and riding bikes into town!</div>
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At night, Wendy and I would head to the beach to search for crabs. So much fun to watch them scurry around. Sometimes I think they can move sideways faster than going frontwards or backwards. </div>
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Some of them were pretty big and it was fun to scare Wendy by telling her one was coming at her.</div>
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There were crabs of all sizes! </div>
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Some great pictures of the girls loving the ocean!! </div>
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One of my favorites!!</div>
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Bella and Danielle have been friends since elementary school!</div>
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We laughed a lot as Danielle tried to get Bella's hair out of her face for the picture!</div>
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Having fun!!</div>
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Then they got creative and wanted to do the heart photo!</div>
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It was a great day!! </div>
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Fun afternoon with my girls!! </div>
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Another favorite picture taken in front of the house we rented! </div>
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Grandpa and the girls!!</div>
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Returned later to the ocean to try to surf those big waves! </div>
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They had a lot of fun and spent a lot of time fighting not surfing the waves. </div>
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Even found a message in a bottle. Wendy and I were so hoping it was from Mom but it was written in red crayon by a child and said "We sin but God forgives us". </div>
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Enjoyed seeing the squadron of pelicans!</div>
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Wendy and I collected a lot of shells along with our message!</div>
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Loved our time in North Carolina!</div>
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Due to Sam's limited mobility and the houses being on stilts in North Carolina we had to figure out a way to get Sam up and down the steps. Sam weighs approximately 130 lbs. so this was no easy task but if there is a will there is a way and Bella and I got quite the workout while on vacation.</div>
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When we returned from our vacation I felt relaxed and re-energized and one evening as I was doing some research on the internet I came across a free trial of a speech device for people who have had a stroke or brain injury. The website is <a href="http://aphasia.com/">Aphasia.com</a>. I have often looked at speech devices but didn't want a device to talk for Sam. I'm not sure how I came across this device....guessing divine guidance...but the Lingraphica device not only speaks for the person but it has a lot of speech exercises and practice sessions which is what really interested me. As I looked at the device I realized I had downloaded some apps on Sam's Ipad that he loved from this company. The pieces of the puzzle were beginning to come together. Sam is 12 years old but the combination of Down syndrome, brain injury, apraxia, aphasia, hearing and processing issues have kept Sam delayed in speech production. Sam has certain phrases that are very clear and can be understood by most people. But after working for years with Sam I know his processing and word retrieval issues cause him the most difficulty. I really think Sam knows what he wants to say and understands much more than what he can demonstrate through speech but retrieving the right words and getting them through a tangled oral motor system is really, really difficult. Sam's clear phrases of "I want water please Mommy dear" have come from years and years of practice. Due to Sam's hearing issues he has always paid more attention to a person's mouth, like lip reading, than overall facial expressions and because he struggles with oral motor issues seeing how proper sounds are made helps him to better form his words. The Lingraphica app on the Ipad that Sam was drawn to showed a mouth up close at it said different words and phrases. When you find things that draw Sam in you run with it. Another issue due to Sam's hearing has always been active listening. It is work for Sam to hear and process so he often chooses to bypass this and just talk at you not with you. He shuts down if you ask him questions but it doesn't mean he doesn't understand or can answer correctly. I have found that Sam can't verbally produce the right answer but given a picture or word choice he can answer correctly about 95% of the time. Here is some information on the apps I use with Sam.</div>
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<strong style="line-height: 1.4em;">TalkPath<span style="font-size: 14px; line-height: 1.4em; vertical-align: top;">SM</span> Suite of Therapy Apps</strong></h2>
<div style="color: #656565; font-family: arial, helvetica, clean, sans-serif; font-size: 18px; line-height: 25.1875px;">
The Lingraphica TalkPath Suite of Speech Therapy Apps for your iPad gives adults with aphasia or apraxia therapy activities designed to help rebuild speech lost due to stroke or other brain injury.</div>
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Developed by a team of speech-language pathologists and Lingraphica, the TalkPath Suite of Speech Therapy Apps moves you through specific skills helpful in the quest to redevelop speech. With easy-to-use unique features common to all of the apps, the TalkPath apps can be used with the guidance of your SLP or on your own. </div>
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TalkPath apps, designed specifically for adults, use proprietary content and media created by Lingraphica for use in our speech-generating devices, the AllTalk<span style="font-size: 11px; line-height: 1.4em; vertical-align: top;">TM</span> and the Touch Talk<span style="font-size: 11px; line-height: 1.4em; vertical-align: top;">TM</span>. The icons used in the apps “project” -- which is a methodology we developed over years of research and experience working with adults with aphasia and apraxia -- to stimulate your senses and prepare you to complete a task. In addition, verbs in the app are animated to more clearly demonstrate the word and add proper context. All voices in the TalkPath apps are recorded, adding to the friendliness and usability of the apps.</div>
<div style="color: #656565; font-family: arial, helvetica, clean, sans-serif; font-size: 18px; line-height: 25.1875px;">
The TalkPath Suite of Speech Therapy Apps were developed with the guidance and input of Lingraphica’s clinical review board and our Chief Scientist, Richard Steele, Ph.D.</div>
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The TalkPath apps are available for purchase and download at your convenience from the <a href="http://itunes.apple.com/us/artist/lingraphica/id310102861" style="color: #7b7e81; line-height: 1.4em;">App Store</a>.</div>
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<a href="https://www.aphasia.com/products/apps/talkpath/talkpath-reading" style="color: #7b7e81; line-height: 1.4em;">Lingraphica TalkPath Reading</a> <em style="line-height: 1.4em;">- Available on the App Store</em></h4>
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<img alt="TalkPath Reading" class="left" src="http://www.aphasia.com/system/cms/images/assets/000/000/067/original/reading144.png?1343667275" style="border: 0px; box-shadow: none; float: left; line-height: 1.4em; margin: 10px 1em 1em 0px; max-width: 100%;" /></div>
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With three types of exercises, the TalkPath Reading app is designed to help rebuild and improve reading skills for adults with aphasia or apraxia. This app provides you with basic word, letter, and phrase identification, and word and picture matching exercises, all designed to be of help with language challenges.</div>
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<a href="https://www.aphasia.com/products/apps/talkpath/talkpath-writing" style="color: #7b7e81; line-height: 1.4em;">Lingraphica TalkPath Writing</a> -<em style="line-height: 1.4em;"> Available on the App Store</em></h4>
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<img alt="TalkPath Writing" class="left" src="http://www.aphasia.com/system/cms/images/assets/000/000/068/original/writing144.png?1343667288" style="border: 0px; box-shadow: none; float: left; line-height: 1.4em; margin: 10px 1em 1em 0px; max-width: 100%;" /></div>
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Designed to improve basic spelling and letter-to-sound recognition, the TalkPath Writing app works on fundamental skills helpful for communication as it moves you through three levels of activities in two sets of exercises.</div>
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<a href="https://www.aphasia.com/products/apps/talkpath/talkpath-speaking" style="color: #7b7e81; line-height: 1.4em;">Lingraphica TalkPath Speaking</a> <strong style="line-height: 1.4em;">-</strong><em style="line-height: 1.4em;">Available on the App Store</em></h4>
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<img alt="TalkPath Speaking" class="left" src="http://www.aphasia.com/system/cms/images/assets/000/000/069/original/speaking144.png?1343667299" style="border: 0px; box-shadow: none; float: left; line-height: 1.4em; margin: 10px 1em 1em 0px; max-width: 100%;" /></div>
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The six types of exercises in the TalkPath Speaking app are designed to help rebuild your memory, word retrieval, and spontaneous speech through naming exercises, repetition activities, and flash card naming activities.</div>
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<a href="https://www.aphasia.com/products/apps/talkpath/talkpath-listening" style="color: #7b7e81; line-height: 1.4em;">Lingraphica TalkPath Listening</a> <strong style="line-height: 1.4em;">- </strong><em style="line-height: 1.4em;">Available on the App Store</em></h4>
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<img alt="TalkPath Listening" class="left" src="http://www.aphasia.com/system/cms/images/assets/000/000/070/original/listening144.png?1343667313" style="border: 0px; box-shadow: none; float: left; line-height: 1.4em; margin: 10px 1em 1em 0px; max-width: 100%;" /></div>
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Through activities such as common pair matching, opposites identification, object identification, yes and no questions, and Wh- questions, the TalkPath Listening app helps with word discrimination, word association, short-term memory, and other skills useful to help rebuild speech.</div>
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The device itself can be individualized to the person who will be using it which I think would draw Sam in further. Sam's speech therapist has been trained by Lingraphica to work with Sam on the device and we will start this next week. Now the real test will be Sam and does it draw him in or does he decide not to use it. I will let you know what happens.</div>
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Speaking of Sam's hearing and listening...I recently took him to his audiologist to have his hearing tested. Since Sam's last surgery he has been refusing to wear his BAHA hearing aid which is attached to his baseball cap. As usual Sam does not tell me why he won't wear it his behavior just indicates that he has his reasons...now as Mom I need to figure out is it behavior, improved hearing or a problem with the BAHA that is causing Sam to not want to wear it. What I wasn't prepared for was the idea that Sam's hearing had improved to the very lowest normal range. The BAHA would be too loud but yet Sam would still require some type of amplification to pick up all speech sounds and weed out background noise. We had a Phonak FM System to use with Sam's BAHA but he didn't like when I used it. However if it could be used with a desktop speaker it might be more viable for him. So I began to work with Brent Bowman from <a href="http://audiologyshop.com/">Audiologyshop.com</a> to see if we could use an Oticon desktop speaker with a Phonak microphone. This is still a work in process. Brent has been extremely helpful in letting me know my options and shipping demo devices to try and see how Sam will work with them. I will be attempting to use a complete <a href="http://www.audiologyshop.com/toteable.html">Oticon system</a> with Sam this week to see how he reacts to it. If you click on the highlighted Oticon system above you can see what it looks like and how it works. When we tried to combine the Phonak and Oticon systems there was too much feedback and my sensory boy will not tolerate any type of mechanical feedback. The system would be helpful as I tend to work with Sam one on one and at a distance while we work in the house and outside. I think Sam would pay better attention and pick up on more with this type of amplification and we could use it on field trips too. But as usual it will be up to Sam to like it or choose to shut down with it which is why I am thankful that Brent has been so helpful in letting me try it before I buy it.</div>
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After Sam's last x-ray Dr. Standard asked us to throw everything we have at hip extension which is by far Sam's biggest remaining issue. So we work on hip extension in the pool twice a week and will start PT once a week. Add in Sam's speech therapy and 4 to 5 days of homeschooling per week and you get the jest of my schedule along with working 2 1/2 days a week at Duluth Trading and a few hours a month at another job. Obviously my energy level has picked up and I am so looking forward to field trips with Sam once everyone else returns to school, that's my absolute favorite part of homeschooling along with not driving in bad weather or having to send Sam out in bad weather.</div>
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Well, that is all I have time for right now. I hope everyone is enjoying their summer, enjoying their children and figuring out how to get to that next level in whatever you are working on. </div>
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suelmayerhttp://www.blogger.com/profile/09990628698335411723noreply@blogger.com3