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:)

The Wheelchair is here, and I named it Carl.

 

This is the huge box that Carl the wheelchair came in. I have named the wheelchair because it might as well be a new family member. We also bought the matching cup holder, as I realized that when I push Max in the wheelchair I will have no other free hands. 

Why does Max need a wheelchair?
Max has muscles that turn to fat when he fatigues. That means each time a muscle transitions a little bit to fat...he'll never be able to get that part of his muscle back. Max becomes quite out-of-it when he fatigues and it happens in places like in the middle of a store. This has cut many trips quite short over the last many months. It's also raised concern with his Neuromuscular Dr. and PT, and his PT and OT at Schreiber. This is not a wheelchair that Max has because he broke his leg. It's not a novelty wheelchair he'll use for a month or so. It's his "first" of many (most likely) wheelchairs. He will use this wheelchair for anywhere there is a longer distance to walk. He doesn't need it small stores or in our house.

Why this wheelchair?
This is the wheelchair that Max's insurance covers. However, we have self-payed for it, because it is likely that he will need an electric wheelchair or scooter within the next year or two. Paying for this one allows there to be "less of an issue" when we ask the insurance to pay for a more advanced one. It was a discussion at his last clinic visit between the professionals, and they determined this would be best. We agreed, and it was a nice wheelchair that was affordable.

Carl will take some getting used to on my part. Max was immediately an old-pro.

I am overwhelmed that I need to push him most distances. This is because Max has muscle weakness throughout his entire body including his arms, hands, back, shoulders, stomach. If he pushes the wheelchair all around Costco, he could fatigue and act out-of-it even while in his chair. This is scary to me because soon he will have some intensive testing at Hershey that tries to pinpoint what is going on neurologically. In the middle of a store, if that happens, even while in his chair, there is no other choice but to leave.

So pushing him myself means that I can't really carry anything at all. So I have to be able to put my bag on the back of his chair. I also have to watch Mimi. She wants to be in the wheelchair off and on, and is annoyed she isn't in her old stroller. Did I mention I can't buy much if I am pushing this chair? So how would I shop? Then I realized, we may be closer to an electric chair then I thought.

Trying out this chair in 18 degrees was not the easiest time for a first go. We are awaiting our handicapped parking permit, which should be here any day...so trucking it through the packed Costco parking lot the day before Valentine's Day with severe windgusts was not the most pleasant thing either. It actually felt a little dangerous as he is lower in the chair and you know how people are in the Cosco parking lot. Ideally, I would recommend that the handicapped permit and the first wheelchair happen at exactly the same time.

All in all, I'm not so sure how this will work...but we did stay in Costco longer than we have with Max in the last 2 years. At one point he asked, "What are we doing here so long?" He hadn't experienced "looking around Costco" in quite a while.

We'll be getting used to Carl one day out at a time.