The power chair is being ordered!!! Hazzah! After almost a year of preparation, trial and error, Jerry-rigging, tweaking, and lots of practice, practice, and more practice, we have found a system that works for Gwendolyn and she is ready to hit the road.
Gwendolyn's disabilities are such that we can't simply go into the wheelchair store and point, “I'll take that one.” She is stronger than many with SMA in that she now tolerates sitting up and she can move her hands. But she is weaker than most folks in power chairs, including those with SMA, in that she doesn't have much arm strength and so figuring out a joystick has proved the big challenge. But, thanks to our team of fabulous, creative, inventive, and determined therapists at CCS, we now have a really great system that allows Gwendolyn to move on her own!
We are using infrared technology — yes, we are space age around here. The great thing about infrared is this requires NO pressure to make it work. So no strength to move a joy stick. Gwendolyn uses her middle and index fingers to simply hover over the infrared light which then senses her and, depending on which hand, goes forward or right. Our clever little girl completely understood the concept within minutes and was so excited to play Duck, Duck Goose to prove it.
Once we discovered this awesome technology the challenge transitioned to arm support and how to keep her arms positioned so she can continually move her fingers and successfully control the chair. This didn't take quite as long, but it did take lots of creativity on the part of our awesome therapists, Jane and Christie. (You guys ROCK!) She now uses a tray with the infrared beam attached to side panels and her arms are supported to keep them in place.
And so now the ordering will begin…and this could prove an equally difficult challenge depending on how nice our insurance company will be. Thankfully, Jane and Christie have experience with this process. And, yes, each individual item has to have a formal justification — as in seat, foot rests, head support, tray, infrared, yada, yada, yada. But, I am optimistic that the majority of what we want will be accepted (positive thinking!). And so, in addition to the awesome power chair news, this means we also need to begin the process of replacing the G-Van with the G-Team Van — a big guy version with an automatic lift. (And we will definitely need a theme song and a wind machine to go with this.)
The big news — Gwendolyn selected SILVER! We were shocked, certain “Pop Star Pink” was the one. But, N.O…Silver is what she has in mind and we think she will be gorgeous in it!
Video and more pictures to follow…