Thursday, April 5, 2018

Sam Smiles Project

My 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.

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.

The video posted on Facebook (link here) 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!

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.

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. Bob's Under the Bridge, 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:  Sam Smiles Project. We keep all of Sam's donors up to date on his Sam Smiles Facebook page which can be found here:  Sam Smiles Facebook.  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.

Sam has become a wee bit of a celebrity with both a write up in our local newspaper and a TV interview!!

Hard at work beating challenges

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

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
Ozaukee Press staff
When you meet Sam Mayer, it’s hard to ignore his wide smile.
And it’s that grin that has come to define his community service project, Sam’s Smiles. 
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.
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.
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. 
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.
“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.”
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.
“Within three weeks in the program, he was belly crawling,” his mother said. “That was my green-light moment.”  
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.
“Sam is a warrior, a fighter and through it all he has smiled,” his mother said.
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.
“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.”
From that effort came Sam’s Smiles. 
“It’s a project that has taken on a nice flair,” his mother said.
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.
His mother recently set up a GoFundMe page to supplement those funds, setting the initial goal at $1,000.
“I think it was 12 days and we hit our goal,” she said, so they’ve upped the goal to $2,000.
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. 
“I want him to learn,” his mother said.
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.
“It keeps his mind active and keeps him doing something important, something that means something,” his mother said.
“I’ve always volunteered. I always wanted my children to volunteer. There has to be something you do that’s for others.
“To see him do all these things as independently as he does is fantastic.”
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.
“He’s been a joy. It’s nice to see him coming to work,” his mother said. “He’s a hard worker.
“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.”
And there are many benefits, she added.
“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.
“It’s good to see him flourish. I’m thrilled with how far he’s come and what he’s able to do.”
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.
Here is the link to his TV appearance with TaTiana Cash from TMJ4: Click here!

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. 

The Sam Smiles Project has raised over $3000 and additional product donations.
Sam has delivered to Mr. Bob's Under the Bridge:
24 sets of long underwear
125 hygiene packs
On Friday he will deliver:
75-100 more hygiene packs
168 pair of warm crew socks
72 long sleeve t-shirts
72 pair of insulated gloves

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!

Sunday, June 26, 2016

Sam 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:

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"!

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."

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!

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!

There is talk about Sam going home today!!!!

We are headed home! This kid is a ROCKSTAR!

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!

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!
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!

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 😊

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 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. 

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.
Last night Sam began to run a fever, highest point was 101. Sam's pain medication contains acetaminophen so that addresses 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.


Monday, June 20, 2016

Finding Time To Write

My 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.

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.

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.

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!

Wednesday, July 29, 2015

A Very Overdue Update!!

Hello Blog followers.  I know you are wondering, what happened?  Where did she go?  No updates for months? Is Sam okay??

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.

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??

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.

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.

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.

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.

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.

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.

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.

So push on...we did.  When Sam was 9, before hip dysplasia and Perthes we did a Path Planning session at his birthday party.

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.

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.

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!

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.

So, now Sam is going to be 15 years old in December and where are we at?

 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.


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.

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.

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.

But we aren't stopping 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!"

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.

 The house from outside.

The screenporch.

Going into the living area.
The living/kitchen area.

The bedroom and bathroom.

 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.

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.

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.

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.

"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!!"

Saturday, April 4, 2015

Taking 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. 

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.

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 on earth has never been all happiness and rainbows. 

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.

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.

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.

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.

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.

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 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 love for Sam, Sam's love for me and God's love for both of us would see us through.

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 Tooth Suds.  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.

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.

Here he is enjoying his vacation!!

Having fun in the pool!!

Brotherly love!!


Playing with Dad!!

Loving on Grandma!!

Selfies with Mom!!

Sam at the Brewer Game!!

Sam having fun with Mitchell!
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, 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!