Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Friday, December 16, 2011

Scoliosis and Nick's Back Bracing Process

Many individuals diagnosed with PWS suffer from scoliosis or a curvature of the spine. Nicholas was diagnosed when he was just an infant. His low muscle tone does not pull strongly or evenly on his spine and as a result a curve in the spine was formed.

If his curvature increases too much, his organ function can be effected. Things like breathing and heart rate can be disrupted.

Two years ago, Nicholas's curve began to increase to over 25 degrees. His Orthopedist, Dr Zimbler, treated him aggressively and ordered him a brace. It is a hard, clunky device made of rigid plastic with Velcro straps in the back.

This is Nicholas in his brace last year.


The good news is....Nicholas loves to wear it. He calls it his "Franklin Shell" because it reminds him of Franklin the Turtle. I think it must also give him some much needed support to his spine. Dr Zimbler x-rayed Nick in his brace and was happy to see that his spine looked straight as an arrow.

He wears this brace for about 4 hours during the day and another 4 hours or so at night.

The only disadvantage to the brace is of course, growth. In the last few months, Nicholas has had a growth spurt, outgrowing his beloved brace. So this week, we had an appointment with our good friend, John Wall, Nick's Prosthetist/Orthotist.

We have worked with John since Nicholas was an infant. He is very tolerant with Nicholas and his difficulties staying focused. He always provides a video or two to help keep Nicholas entertained. He is a master at distraction, a relentless tickler and a lovable "kid at heart". He has designed and manufactured a slew of back braces and foot orthotics for us over the years. He is yet another "special healer" whose contribution to our son's well being means so much to us.


Here, John places a specialized breathable t-shirt on Nicholas. This t-shirt is worn under the brace.  John then takes several measurements, front, back, length, height etc....
  
It takes a long time to take so many measurements but John's calm demeanor and great sense of humor helps to keep Nicholas entertained as he is fitted for his brace.

This time Nicholas chose a fish pattern for his new brace design. It looks something like this....


It will take John about 2 weeks to manufacture the device.
I will post photos of the finished product during our next meeting with John on December 30.