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, October 1, 2010

Nicholas's "Franklin Shell"

Nicholas was diagnosed at birth with scoliosis, a curvature of the spine and kyphosis, a hunching forward of the spine. He is followed by Dr. Seymour Zimbler at Children's Hospital in Boston. After careful x-ray examination, it was determined that Nicholas's curve was calculated to be about 28 degrees and advancing upward.

According to Dr. Zimbler, all children diagnosed with Prader Willi Syndrome will experience some form of scoliosis due to their low muscle tone. Weak muscles pulling unevenly on the spine can cause continued curvature of the spine. When this curvature advances to >40 degrees, Dr. Zimbler explained that inner organs like the lungs and liver can become adversely affected. At this point, surgery is usually recommended. The surgery is a long (10 hours or more) and complex procedure which involves placing straightening rods into the body. Many individuals diagnosed with Prader Willi Syndrome will require this surgery.

To be more proactive in preventing this surgery, bracing is usually recommended. Needless to say, my husband and I did not need any convincing to decide to begin bracing our son. We were referred to a brace specialist in Peabody, MA,  named John Wall. He designed this very cool plastic and Velcro brace for Nicholas. The brace is covered with very cool construction and automotive vehicles. Nicholas is to wear the brace as much as possible throughout the day and night.

I thought.....no way would Nicholas consider wearing such a confining and ugly device! But once again, I underestimate my son. He was not sad or horrified. He was not afraid of what others might say. On the contrary, he was thrilled to wear what he calls his "Franklin shell".  For those of you who do not have small children, Franklin is a cartoon turtle. He experiences all kinds of adventures with his pals, the other woodland animals  like bear, goose and raccoon. Nicholas loves this show and now loves the fact that he can wear a shell just like Franklin!

I am amazed at this young boy's ability to embrace any difficulty that comes his way. I am beginning to better understand the meaning of the word resilience.