Sam Mayer Update

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.

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.

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.

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.

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.

I love this crazy, tragic, awful, BEAUTIFUL life! Stay tuned for next Tuesday's adventure with the PT and custom orthotic fitting....oh joy!!

Living 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!!

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.

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!

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!!

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.

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.

The view the other direction was just as beautiful.  A nice time to stop and thank God for our safe travels.

The second outlook had this wonderful plexi-glass viewing area for small children or people who use a wheelchair.  Sam was mesmerized.

Sam had a great time watching the kayaker works his way through the rapids.

The kayak was going upstream...hmmm...facing his challenges, seemed to fit our theme???

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.

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.

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.

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.

But he was happy and we both could relax.

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.

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???

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.

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.

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.

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 I knew 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.

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!

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.

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".

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.

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.

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.

Finding Peace!

I hope to find time to write more in the near future now that Sam's external fixator is off.  I won't say life has calmed down because Ben is about to graduate, Danielle is driving and working, Jeff's work schedule is always demanding when you own your own business, I will be going back to work and Sam has another journey with rehab that will also extend my time and talents.  Add in a difficult journey through grief as I continue to miss my Mom and an impending road trip.  I have so many topics I want to share like our speech journey, NAET treatments, therapy for the older child, building independence and would love to hear from my readers what topics they would like me to touch on. But let's start with an update on Sam.

Last Wednesday Jeff, Sam and I again traveled to Baltimore for Sam's 3rd hip surgery...the removal of the external fixator.  I don't know if I can put into words the feeling for ME of having that device removed.  It was like a huge weight was lifted from my shoulders. No more pin care, no more gross photographs of stuff oozing or flesh collapsing or black flesh.  No more worries about him accidentally hitting the device on the wheelchair or the doorway or it getting stuck in a cushion.  Now keep in mind that's just how I felt can you imagine how Sam felt?? I think in some ways he missed it but that was short lived and he seems happier that it is gone.  Of course he wasn't happy when he realized the external fixator was gone and a brace on both of his legs took its place.  As I spoke to parents of children with Perthes and the kids themselves many of them didn't like the extension bar that had to be put on to the external fixator twice a day and at night and most of them didn't like the brace. But in true Sam fashion he would ask for the bar to be put in and he is happier with his brace on than when it is off.  Surgery is never something we take lightly with Sam but this particular surgery went very well...guess those special angels were helping him along.  Sam had a little bit of a melt down when we got to the pre-surgical suite.

I know every child is different and for Sam who has multiple speech issues, bi-lateral hearing loss, processing and sensory issues there are so many little things that can be the difference between a pleasant experience and a major melt down.  Because I am with Sam 24/7 and we have gone through a lot on our journey I can often anticipate how he's doing or in what direction he is headed.  We were originally given an arrival time of 6:30 a.m. and surgery at 8:00 but then we received a 2nd call from Dr. Standard's office that we were to be there at 8:00 with surgery at 10:00 a.m.  At 7:00 a.m. we received a call from the OR wondering where we were and when they could anticipate us.  I explained the situation and we rushed over to the hospital.  Because they were now behind schedule they were trying to rush things along...big mistake...Sam doesn't like to be rushed, he needs time to process and if he feels rushed he often feels threatened and will just shut down. The nurse went through the usual questions attempting at first to address them to Sam but not waiting long enough for an answer so he quickly withdrew from talking to her.  The dreaded hospital gown was on the end of the bed which means Sam would not transfer to the bed.  More people began to arrive and Sam unable to follow all the conversations began demanding my attention because he needed to hear my voice and reassurance that he was okay and I would be with him.  When Sam continued to refuse transferring from his wheelchair to the bed I asked if they could all leave the room for a moment and then I asked Jeff to remove the gown and the blanket from the bed. I got down to Sam's level and said "On the bed, watch your movie."  Sam smiled, stood up and allowed me to transfer him. Some things are just that simple if you respect Sam's needs and the way he communicates best. I discussed everything with the anesthesiologist explaining Sam's anatomy anomoly of 3 bronchial tubes instead of two, his floppy and reactive airway, his extra esophagul fold, his upper airway issues, starting the IV after he is in the OR and suggesting that they put it in his foot instead of his hand if they want it to remain in when he wakes up. We talked about the Versed and how I would need to administer it from a syringe with fewer people in the room and that Jeff and I would get him into the hospital gown after it took affect. This was the first time I was brought back to the OR with Sam until he was given the mask and before they intubated him. I told them to take good care of him, I gave him a kiss and told him I loved him and I walked back to the waiting room to sit with Jeff. As I removed my blue suit I sensed such a feeling of comfort that I knew my Mom was right there with me and that my family and friends were busy praying.

As I sat in the waiting room I replayed in my mind the twists and turns of my journey with Sam.  During Sam's 12 years I have been required to make so many medical decisions for him and each and every time I wonder if I did the right thing. I thought about how I chose to homeschool instead of send Sam to school because of his weak immune system and his speech issues. I thought about how I chose NACD over traditional therapy methods and suddenly I began to feel at peace...a peace that has been years and years in the making.  None of the things I describe above were quick decisions, each was researched, prayed on, discussed between Jeff and I and all of them came with people who supported our decisions and those who questioned if we were really considering the best option for Sam...but that's just it...I have spent all these years taking my lead from Sam, trusting my gut and trusting the Lord.

I had such a difficult time wrapping my mind around the external fixator process for Sam.  There were so many reasons I could come up with on why we shouldn't do this but only one on why we should...what if??  What if this is his chance to regain his mobility and walk without pain? During the last 4 months I have been tested to the depths of my soul.  I chose to travel across the country and do the surgery and we endured the challenges and struggles that came with that decision.  I then lost the person that supported me in everything, my rock, my sounding board...the person who took care of me when I wasn't taking care of myself. I didn't just lose my Mom, I lost a part of me...an extension of me. I took on Sam's complete medical care and therapy needs. I had originally planned to have nursing care if I or Sam could not do the required pin care. I had therapists lined up for PT and Aqua therapy.  At first Sam fought pin care and I struggled with the process and just seeing the device sticking out of my child's body.  But as Sam adjusted...so did I.  He and I figured out a system of transferring, showering and completing the process. He trusted me and I listened to him...both his verbal and non-verbal expressions. I adjusted and tweaked the areas that caused him anxiety or discomfort.  This is what often happens with Sam. He guides me.

So then I have a decision...do I turn that responsibility and process over to someone else?  Being a Type A personality...the answer is usually "No". It is not because I feel I am the best at everything.  I'm not the best speech therapist, I'm not the best PT, I'm not the best teacher, I'm not a trained medical person, I am not perfect or claim to be...but I do understand and love Sam with all my heart and sometimes that's the real difference.  Sam's education has never been about goals written in an IEP, his speech has never been about programs to re-mediate the effects of apraxia and aphasia, his PT and OT has not been about reaching normal milestones and his behavior is not based on a proven system of modification.

Sam and I are living each day together, learning from each other on what works and what doesn't work for us. We have good days and bad days but each day we learn something that worked or something that didn't work.  We choose to change, to try, to learn from each other because we genuinely love and care about each other.  We respect our differences, we laugh a lot and we are encouraged and motivated not by a paycheck or a set of goals written on an IEP but instead by a smile or an exclamation of  "We did it" or that look of pride that a child or parent gets when they have figured it out, when they have succeeded. I don't know what Sam's future holds but I do have the ability and means to meet a few very important goals for Sam...to be happy...to feel safe...to be loved...to be appreciated...to be listened to...to be valued...to enjoy his family and his life at his pace and in his way.

Just like any parent, but especially a parent of a child with special needs I do some of those things that a parent should never do...second guess, compare, worry, envy, talk more/listen less, be inconsistent, over-protect, make excuses for bad behavior and do things for Sam instead of helping him to do them on his own which in turn disables him further.  Yep, I'm not perfect...but Sam loves me anyway.

As I've traveled this journey and have spoken with many wonderful families I have come to the conclusion that each and every one of us is on a very different journey with very different children.  I share Sam's story as my therapy and to inspire and encourage.  I have always kept it real sharing the good, the bad and the ugly.  I had a request to show more of Sam's hip x-rays so I compiled some of them here.

The first one is when Sam was diagnosed with Legg Calve Perthes in his left hip. The second, third and fourth x-rays show Sam's hip after the double osteotomy surgery.  The last x-ray shows his hip after the external fixator was put on.  In 6 weeks I will share his post-op external fixator removal x-ray.  Since I shared all the ugly photos of Sam with his external fixator on, here are a few of what the thigh and hip look like after the external fixator is removed.

I know these are lovely, both were taken when we removed the surgical bandages for the first time. But honestly Jeff and I both thought they looked better than we expected.

After his 2nd shower they are healing up nicely and we hope to get him into the pool by the end of the week.

Sam is sporting the stylish Scottish Rite Brace at this point 23/7 for about 4 weeks and then he will only need to wear it at night for about 6 months.

My newest challenge is the stretching exercises that Sam is required to do daily to keep his hip from getting stiff.  Challenge #1...getting him on the floor without throwing my back out (I know someone will say do them while he is in bed, funny thing about Sam he will not roll over on any surface besides a floor...fear of falling maybe??). Challenge #2...modifying the exercises until Sam has fully recovered from the surgery and has less pain to do more movement. Challenge #3...getting Sam to cooperate and trying to make it fun (yeah, still working on this part).

Sooooo...here is what Sinai shows hip abduction and hip flexion exercises should look like. I always love when they show a typical fairly flexible person doing the stretches.  I always want to volunteer Sam and see how that photo shoot goes.

But no problem, we'll get there.  Due to Sam only being 3 days after surgery and still in the healing process touching him will cause agitation and resistance so to begin with we'll work on getting Sam used to being on the floor, removing and replacing the brace, rolling on to his stomach and following my lead to the point he is comfortable.

Hip abduction is the hardest thing to work on with Sam without direct contact. He did move his right leg out and wiggled his left leg as far as he was comfortable but I didn't catch that moment with a picture. We will probably use side stepping in the pool to work on this particular area.  Right now with hip flexion he seems to need his right leg bent to assist the flexion movement of his left leg which looks like this.

No he's not stretching up to his chest, but this was all his own movement...not bad for a first try. As he allows me to assist I think that motion will greatly improve since he can bend himself in half while seated to pick up something off the floor. Having him sit on the step in the pool and reaching will also help with this.

The next set of stretches are hip internal and external rotation.

 Sam's worst area has always been internal rotation.  His external rotation was pretty good...keep in mind this was the first time and only 3 days after surgery.

He did get further apart on the internal rotation but it was only for a nanosecond before he readjusted. The final set of stretches is for hip extension, probably the most important area for Sam. Sam loved the extension bar on the external fixator which to me said that stretch really, really feels good and I need it.

I'm guessing for Sam we will spend a lot of time on his stomach working towards a good yoga cobra pose. 

Starting with the picture above, here is Sam currently working on this. Understand...just getting him used to being on his stomach again was a work out.  Sam is kinda like one of those sway back horses, he has a hip tilt and a tummy drop which we hope to reduce in both areas through diet and exercise. I see a lot of swimming in my future and just in case you were wondering wearing my swim suit in public is not one of my favorite activities...but for Sam I will suck it up, put on my big girl panties and deal with it.

As we watch Netflix or play a computer game we will work on getting this stretch to look more like the picture below.

Let's not hold our breath for that...okay?? I will also see if I can put a pillow under his left knee while he is on his stomach to get some additional stretch in the left hip.

At some point I hope to return Sam to PT or strength training.  Dr. Standard made it very clear to me that stretching was much more needed with Sam than strengthening.

And getting back to my finding peace...am I happy with this surgery??  We still have a long way to go to really determine the outcome but I have found peace within Sam's diagnosis of Perthes...and his name is Dr. Shawn Standard.  I was impressed by the number of children he sees with Perthes, I was impressed with the medical advances he uses in his practice, I was impressed with the medical training he has had...but most of all I was impressed with him as a person.  There are some people that you meet that you just sense or know that they are a good person, that they care and want to help. I felt that way when I met Sam's pediatrician, his NACD evaluator, his pulmonologist, his dentist, his favorite Aqua Therapy and OT therapist, his audiologist, his speech therapist, his strength trainer, his NAET doctor and other people that have touched our lives. When I met Dr. Standard he explained to me that Sam's Perthes was in an advanced stage for an older child (the worst possible situation), he listened to my concerns, he took time to get to know Sam and he told me that no matter what...he was in this with me until the very end.  We would figure this out for Sam. We have talked about hip fusions and hip replacements, saving and salvaging the hip. I don't know where this journey is leading us but I am happy we have found someone who is willing to take the lead and be there for the good, the bad and the ugly.

It's time for some more stretching.  Continue to keep Sam in your prayers for healing and pain free mobility.

Bootiful!!!

There have been many times in my 12 years of life with Sam that he has told me "Mom bootiful" or something is  "bootiful". Each time I smile and I accept his wonderful compliment and yet a part of me wonders what Sam thinks beautiful is.  I don't really think his "bootiful" is about appearances or outward beauty.  And then the other day I came across this quote:

And now I get it...I immediately thought of Sam...not because of his telling me I'm beautiful but instead because he is beautiful.  Read the quotation again and think about Sam.  Yeah...that pretty much describes Sam and what really hit me is the life lesson Sam is again teaching me.

I'm often asked "How do you stay positive?" Hmmm...well I live and learn through Sam. Yes, it would have been easy to give up when Sam was diagnosed with a brain injury along with Down syndrome. I could have given up when I learned Sam was going to have hearing, processing and speech issues beyond what other children with Down syndrome encounter. I could have thrown up my hands when Sam's diagnosis of Perthes  hit and we went through one surgery with limited success and a second surgery that challenged me beyond what I thought was possible.  Add in the loss of my main support system, my mom, while riding the challenges of the 2nd surgery and no one would have been surprised if I just fell apart.  And I did...and I do...but then I look at Sam and I learn from his example.  Sam has faced more challenges in his 12 years of life than most of us will ever face....AND HE IS BEAUTIFUL!!!

It is because of the innate beauty of Sam that I feel more, love more, appreciate more and have become the person I am.  Since Sam's birth I have always prayed that God guide me every moment of every day and I could have questioned if that were occurring considering the twists and challenges in our journey and my life but as I get older and I reflect on my life I see the guidance.  The people, the events, the challenges, the joy that have been placed in my life are forming me, changing me, redefining me into the person God wanted me to become.  I think He still has a lot of work to do but I trust Him.

I really had to learn to trust in the last 4 months.  I knew the surgery in Baltimore was going to be difficult and I tried to prepare myself for that but I don't know if anything prepares you for the sight of the external fixator sticking out of your child.

Add in a few infections that included blackened flesh, new holes opening up and just plain goop coming out of your child along with a heart rate of 133, fever and an absolute refusal to stand or move and the stress mounted.  When Sam feels bad...I feel bad.  All of this added stress took a toll on my health and I could do nothing but trust in God.

I have always promised to show the good, the bad and the ugly and because I also have Perthes parents that read my blog I want to share some graphic photos on Sam's pin sites.  If you are squeamish you may want to skip these but I think it helps to show the progression of healing.

The first row of pictures was the worst pin site which is located on the back of Sam's thigh.  The first photo was after the antibiotics for the 2nd infection.  You can see the blackened flesh which was much darker before the antibiotics, the hole that opened above the pin site and the fleshy goo.  Now keep in mind that the first picture is actually an improvement from the original onset of the infection.  This particular pin site has left a huge depression in Sam's thigh which I will show in the next photograph.  The second row of pictures are the hip sites.  The two lower holes also turned black and now only show bruising.  The third row of photos are the 2 lower thigh sites.  These were by far the largest holes when we started since Sam flipped around a lot after surgery and tore these open.  The far right photos show Sam's pin sites about as stable as they get. The next photo shows the divot in Sam's thigh and the bulging of his revised scar surgery from the hardware removal of the first surgery.  Not the easiest photos to look at...I know...I'm living it.

It wasn't the antibiotics that got him stable.  It was a combination of prayer, Medihoney rope and NAET allergy elimination that has finally gotten him stable but all of them came to me through guidance from God.  My goals for Sam have always been the same, three things...healthy and happy and to reach his full potential.    For my Perthes parents Medihoney is a calcium alginate dressing that is impregnated with Manuka Honey which is a medical grade honey. Medihoney wound & burn dressing helps promote moist wound healing in challenging wounds and assists in autolytic debridement. I came across a medical study of Manuka Honey in treatment of pin sites and decided to give it a try.  NAET was something I had researched through the Autism sites and a good friend just happened to meet a Wisconsin NAET doctor's wife while traveling on a train in Chicago and she knew she had to tell me about him.  The next photo shows Sam pin care process with the use of the Manuka honey.

Alright...you have made it through the worst of it and within the next couple weeks I will have made it through too.  Sam's external fixator removal is set to occur in Baltimore on May 17th.  We will leave on the 15th and on the 16th he will be fitted for his Scottish Rite Brace pictured below. He will wear this brace for at least 4 weeks, maybe more...23 hours a day, 7 days a week.  After that point he will wear the brace at night for an additional 4 to 6 months.

I also want to provide some information on NAET and muscle testing which is responsible for getting both Sam and I back on the road to good health and good energy.  My journey into holistic medicine began with Sam and I have long been familiar with muscle testing.  For those who are not...muscle testing is based on the concept of internal energy fundamental to traditional Chinese medicine, muscle testing is a noninvasive way of evaluating the body’s imbalances and assessing its needs. It involves testing the body’s responses when applying slight pressure to a large muscle, to provide information on energy blockages, the functioning of the organs, nutritional deficiencies, and food sensitivities, among other things. It can also be used to test the body’s responses to herbs and other remedies.

NAET 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.  I will try to share more about our experience with NAET in a later post.  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, Ribonucleic acid (RNA) is a ubiquitous family of large biological molecules that perform multiple vital roles in the coding, decoding, regulation, and expression of genes. Together with DNA, RNA comprises the nucleic acids, which, along with proteins, constitute the three major macromolecules essential for all known forms of life.  Seems like a pretty important process that a person should not have a sensitivity or issue with.

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.  Hmmm...stress can cause an imbalance in your adrenal system and many of my symptoms are related to adrenal imbalance such as fatigue, hair loss, acne, difficulty sleeping, anxiety, abdominal weight gain and mental clarity issues.

Sam and I are feeling better, recharged, stronger and ready for the next leg of our journey. Dr. Vu uses a combination of desensitizing treatment and supplements to take care of these issues.  I have provided a lot of information in this post and am happy to answer questions and I will try to expand on NAET in a later post.

But I want to end with some positive thoughts and reflections.  The last 4 months have been the roughest to date.  I am still in the grieving process and miss my Mom each and every day...but there are blessings to be found.  Each time I transfer Sam from his bed to wheelchair, wheelchair to recliner, wheelchair to commode....Sam stops and gives me a great big hug and pats me on the back.  I love and look forward to those hugs and I am thankful.  Sam and my health issues have caused me to try something new in combination with something I had already found helpful but had not kept up with and I am thankful. Random acts of kindness from family, friends and strangers have reaffirmed and strengthened my belief in the human race and added to my support system and I am thankful!  My husband telling me I'm a good Mom and listening to my worries and concerns, helping me in Sam's care as much as he can and making sure I know I am appreciated...I am thankful.  I pray more, trust more and recognize the guidance I am receiving and I am thankful!

As I watch movies, read books or think about my life I can't help but see so many of the pieces begin to fall together and make sense.  This life...my life has made me appreciate the things that at one point I may have found unimportant or may have taken for granted. The challenges have built me, strengthened me and humbled me.  I strive to be Sam's kind of "bootiful" and I know that over time I will continue to develop the understanding, sensitivity and appreciation of life that Sam innately exemplifies. Good Night everyone, may God bless you and your families and make us all "bootiful"!!