Thursday, February 25, 2016

The Growing List and Wheelchairs in Parking Lots

Still no handicap parking permit- it's almost been a month.
Let me say that it is really dangerous to navigate a wheelchair across an entire parking lot. Cars don't see the wheelchair because it's low.
As I am the proud mother of another child who has a diagnosis of Pituitary Dwarfism, let me say that when one is in a wheelchair- you might as well be a Little Person, too. 
If I don't hold onto the manual wheelchair and it's say "windy"- which it has been, the chair could literally take off on Max. I don't think he could stop it due to shoulder/arm/hand weakness. So that's great. Another check mark for the need for an electric chair that he can maneuver himself.
We really need the parking permit to arrive. We are now literally praying for it's arrival. At first I thought after the Costco trip that I might be blowing the dangerous-ness out of proportion. Then today a lady at the library nearly backed her car into Max. (Please excuse my language to all in the parking lot at our nice, family-friendly library.)

I have a growing check-list of things:
Parking placard.
Revisit with Orthotics for new orthotics (Requires walking up and back, up and back and then casting. And then waiting.)
CoQ10 ok from insurance
Genetic panel test ok from insurance
Upcoming speech evaluation (there is also facial weakness)
EMG test -testing Max's arms. Did you know that this is how they diagnosis ALS? The last time we were in the room we found out Max had Muscular Dystrophy. Now they are testing his arms to see if there is something in addition to or part of his MD. We'll know that day during the test if something else is up. (Nervous).
EEG test - 24 hours of head wrapped up craziness.
Buy Dragon Voice Recognition and learn to use with OT.

Here's Max at 5 years old walking into our awesome library. Today he rolled in using a wheelchair, pressing the buttons that open the doors ahead of him. We really were just seeing how he could handle the wheelchair in here. It felt like he would have been fine without the chair... but he looked comfortable in it browsing the books which were at his eye level.
On the way back out to the car I realized that he wasn't walking slow and limping, as he usually does on the way out. Instead he was rolling:)

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