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.

Wednesday, January 4, 2012

The Finishing Touches on Nick's Franklin Shell

Last week we went back to visit John Wall, our good friend and favorite Orthotist. He made the final adjustments on Nicholas's new scoliosis/kyphosis brace.

Scoliosis is a curvature of the spine, kyphosis is a hunching of the upper back and shoulders. Both, are common to individuals diagnosed with Prader Willi Syndrome. Hypotonia, or low muscle tone throughout the body seems to contribute to these conditions.

Nicholas loves his new brace. As I have mentioned before, he calls this his "Franklin Shell". I would love to take credit for this brilliant naming of the brace. But alas, I cannot, as it was Nicholas's brain child and clever observation. (mental retardation, my foot!)

"Franklin" is a turtle. He is one of the cartoon stars of PBS television and another of Nicholas's favorite characters. Franklin is also a book series. Nicholas adores these stories and has been the only student at the elementary school library to check out "Franklin's Halloween" in the middle of winter. In fact, Nicholas has checked it out all year long, some 27 times. Thankfully, the school librarian has been very accommodating in indulging Nick's passion for Franklin.


With the Franklin Shell now complete, John made the last finishing touches on this new beauty of a brace.

John puts the brace on and Velcros the straps in the back

He marks where he needs to make minor adjustments, like cutting back some of the molding.

These Velcro straps go over Nick's shoulders and attach to the front of the brace to pull his shoulders back

I love this photo of Nicholas looking at John.

Weston waiting (not too patiently) as John attaches the left strap

Then the right.

Next, John places a red line on the strap with so that we know how tight we must adjust the straps.

And viola, it looks something like this!

John also cuts down Nick's shoe inserts so that they now fit inside his shoes.

The shoe inserts are used to correct a condition called valgus foot, or "flat feet" another orthotics issue that is very common to individuals diagnosed with PWS. It can be a very painful condition and if left uncorrected, can lead to other more serious issues like hip or knee problems. Nick has had shoe inserts even before he learned to walk!

And so with new shoe inserts and a new Franklin Shell, Nicholas is all ready for a happy and healthy New Year.