Friday, April 29, 2016

Dynamic Movement Orthotic DMO

Peter Parker: [voiceover] Whatever life holds in store for me, I will never forget these words: "With great power comes great responsibility." This is my gift, my curse. Who am I? I'm Spider-man.

And to this I say, to the parent of a child with great responsibility, comes the search for a great gear.

This was a two year search process to get this custom-made orthotic.  Remember the old fashioned hard shell back braces?  

Hayden has what is known as neuromuscular scoliosis. He has a diagnosis called hypotonia. Because of this, his muscle tone is weak and he has a hard time holding his posture straight.  His scoliosis increases as he ages with low muscle tone and poor posture it becomes a vicious cycle of managing symptoms.  The hope is that this suit will help give him added strength for his posture and slow down the progress of his scoliosis and delay rod surgery.

I started this journey after reading a blog from a parent in London years ago. The child had a similar diagnosis and the suit seemed to work. Shortly thereafter, the brace came to the United States through Boston Brace.  My search for an orthopedic in Austin that would prescribe this brace was exhausting. None have ever done it and his current doctors didn't want to be the first.

Finally, I contacted the manufacturer and they recommended a doctor in San Antonio. After several long trips and appointments back-and-forth, we finally got to pick up the product yesterday.

The suit is entirely custom-made. Every inch of his body was measured. Each panel contains different strengths of elasticity to help support his posture.

His name is even on the tag.  I don't think the real Spiderman suit was designed or made as well as this one.  In case you don't see the theme, AFO's (ankle foot orthotics) are also Spiderman as well as his nifty Spiderman shoes. He is so proud and we are so happy to possibly prolong his need for spinal rod surgery.

This is the latest and greatest.
He will mainly where this at bedtime while he is relaxed along with knee immobilizers but minus the mask.

Wednesday, April 20, 2016

Home from Baltimore 2 month feeding therapy rehab

I can't believe we have been home for 3 months!  The first month home was more difficult that I imagined.
I now see why many people relapse after intensive therapy.  You think why would or could that happen after all that you worked for and sacrificed?  The truth is, it is hard to return to normal life and have so many variables enter in after you have been living in a controlled successful environment working on nothing else.

The first day we were flying back on the airplane and had to do a feeding session in front of everyone at the airport with crying and defiance.  It was stressful on everyone but we did it and got through it.  Everyone was so so so happy to be home.  We had a huge appreciation for our car, our beds, the grocery store, our friends and everything about being home.  Each of us was changed and full of gratitude.

We all worked hard at continuing what we learned.  Transitioning is hard.  School eating and strict protocol was a difficult transition.  The teachers, staff and friends were all very supportive.  He relapsed terribly for the first two weeks.  I was there every day. The environment was overstimulating and he wanted to see if he could go back to his normal behavior.  It made it tough on us as parents because we had to be extra disciplined to not let things slip in the slightest or he would push to see just how far he could slide.

We held cooking play dates with a few friends.

We went to birthday parties and actually ate!

The mind blower was the trip to the dentist!  It was the first time he didn't throw up or have to be sedated for a cleaning exam.
Slowly things started working again and then he sprang forward trying new foods.  See the video.  I was so hopeful and even thought we were making great progress and could re-introduce him into the regular cafeteria with his friends.

Then, he relapsed again and started refusing food at school and home.

We have modified his rewards and have to adjust with him.  It is not over for a long while.  It is hard to see others that have gone through the program completely eliminate their need for their feeding tubes when we are in the midst of a tough relapse.  I know we can get though it and the excitement from the new things like eating out at restaurants without fear of vomiting is so very exciting.  We feel more confident to travel and live our lives without confining ourselves to "safe" environments.

So for those other families struggling out there with children with intense feeding issues, I say hang in there and celebrate every bite.  I am thankful for the g-tube and it's life saving services and happy that my boy now can enjoy some of the pleasures of social eating.

Bring on the birthday parties!

Wish Big

I'm glad to finally share some of the joy that our family has been gifted. A year ago this month Hayden was granted a Make-A-Wish. It was just prior to his third spine surgery.   Little did we know that the rest of the year, he would have such a rough go medically and yet we feel fortunate to have sustained and endure many more hospital stays (that were not all positive) and surgeries.

The good news of the wish gave him much to talk about and much to look forward to. He would tell all of his nurses and doctors about his treehouse during each stay at the hospital.

Here we are a year later and construction has begun.

Make-A-Wish grants wishes for children with life-threatening medical conditions.


When he was interviewed during the wish process, he expressed a great desire to have a treehouse that he could throw airplanes out of the window.  A treehouse for someone in a wheelchair is additionally complicated. Fortunately, we have a great tree and a great space. The kids can't wait to wheel up into the new tree house in the 200 year old oak tree. It has the best views and you can see downtown and the highschool football stadium from up there.
The ramp will be straight out.  If you look closely at this picture you can see the red strings that outline the length.

Before we said anything, we got approval to post on social media. We are thrilled to show you the progress. Every day Hayden is overjoyed as he sees it coming along.  He has talked about it at his school to all of his friends into his teachers. The principal had suggested if they finish within the school year, his class can do a special field trip.

They have worked steadily through the weather and impressed me. Austin Tree Houses is donating time and expertise and Tri Supply (whom I used for our home construction) has donated the windows and doors. I don't have any more of the information for most of the donations that go into this. But for all those that have helped make this possible, thank you!

However, they are needing volunteers from the community to help construct the most important part which is the ramp. We will be digging holes on Friday afternoon for the post to support the long ramp.

It is the greatest wish and long-term gift as the treehouse will get to continue on and bless our entire family. The timing couldn't be better as he will have to undergo extensive 12 hour surgery this summer where he will have a 6 week recovery.  Instead of dreading the summer, he will have the treehouse to focus his energy and good thoughts to get back to playing independently.