A New Creation

Trying something new!  As in, we don't think anyone has made anything like it!  Thanks to the creative minds of our awesome Physical Therapist, Stephanie, and Adam, an Orthotist at A Step Forward.   I'm so excited about this and it hasn't even been made yet, but it is in the making!  Stephanie got in touch with Adam and explained the difficulty we were having with getting Jaron access to his augmentative communication tools.  

We just received the equipment funded by the Wheels to Walk Foundation including, jelly bean switches, a mounting arm for button positioning, and a computer switch interface.  Basically, this means Jaron can play games on the computer that are created to be used with a button instead of the computer's mouse.  Crazy!  

The obstacle for Stephanie and Adam to overcome was to give Jaron the support he needed to sit up with complete support for his back and neck but also the ability to move his head.   Stephanie gave very specific requests and Adam thought for days and dreamed up an original head/neck/torso brace.  When we all got together at one of his phyisical therapy sessions, Adam whipped out this long white foam pad and two velcro strips.  He measured, cut little armpit spaces and strapped it around Jaron's waist. 

Stephanie and Jaron trying out the foam
pad and velcro brace that Adam made. 

He seemed to relax when he had
good torso support. Now we just
need to work on that neck control!

 It was amazing what a difference that support around his waist gave.  He was immediately more calm, not trying to arch, and allowing Steph to transition him from sitting, to laying and side-lying positions!  Brian and I were excited about the idea of being able to hold Jaron with just the torso portion of the brace!  Adam started brainstorming ideas about how he would separate the head/neck portion from the body portion.  He mentioned some kind of flex-joint he can put in the neck to make it moveable and some disconnect-able parts for the head brace.  This is all new ideas and we just can't wait to see what Adam will create!

Brian used some floor pad that goes
under wood flooring to make a little
brace to try out at home.

Today was casting day!  Thanks Abby for keeping the big kids, this was quite an involved process!  First, they pulled on a little tube-like garment with arm and face holes.  He looked like a Teletubbie!  Then, they wrapped the top of his head, down his neck, and around his belly with plaster of Paris.  He wasn't happy but he didn't scream too loud.  The water was warm and by the time it was hardening up, he felt well-supported and he just looked around the room.  I wish I had a picture of this step of the process, but we were using my whole body and 6 other hands to support and wrap him and then hold him still. 

"I am not thrilled about this."

 And this is the cast!  Looks pretty crazy but I am obviously very hopeful that it will make a great impact on the possibilities for Jaron's support and communication!

Jaron's brace will wrap around his whole mid-section from under his armpits to the bend of his hips, leaving a little hole for his g-tube.  The support up the back of his neck and onto his head is the part that Adam is designing brand new!  This support will allow him to play with his switches as they are mounted right next to his temples.  He uses a very slight movement of his head to activate a jelly bean button to turn on a toy.  Without any muscle tone in his neck, it is very floppy and therefore difficult to support.  The switch toys are not only for playing but they will be his window into communication.  Our goal is to find Jaron's "voice."  And I can't wait to see what he will be capable of communicating through this extraordinary invention!

***And just as a side note to my family and old friends:  This definitely takes me back to my childhood, wearing a back brace for scoliosis!  Four, long years, 13-16 years old, sheesh.  They actually had 2 braces up on a shelf in the casting room that looked exactly like my brace.  Jaron's brace, Adam assures me, will be much more pliable and comfortable!***

Haylee trying on my back brace. I think this
is the only picture I have of that dreadful thing!