Archive for the 'equipment' Category

The Wheelchair Situation

September 17, 2010

When I told the wheelchair guy I was thinking about asking a mechanical engineering class if they wanted to take on Chloe’s wheelchair as a project, I was only half kidding.   He wasn’t kidding at all.

“You should totally do that.  Call them and then let me know.  I’ll come to the class and everything.”

So lest you thought a wheelchair was just a chair on wheels, the guy with access to countless “custom” wheelchair parts and straps and cushions and head, foot and armrests thinks we would have more luck letting 20 budding engineers with blow torches take a crack at it.

What is so hard about making a chair that Chloe can sit in?  Well, first, there’s the fact that the human body has over 200 joints.  And if you’re going to be strapped into a chair all day, it helps if none of them are squished or strained or crooked.  And if you’ve ever seen the way Chloe whacks her fingers into her headrest when she gets excited, you know that we have to consider all of these 200-plus joints on some level.

Then there is the exponential degree that athetoid cp can complicate things. Chloe’s neck is so weak that her head must be supported from all four sides.  And we actually have a headrest that can do this.  But her legs are so strong that when she gets the urge to move, she puts so much strain on her headrest that she has, in the past, broken through a centimeter-thick piece of metal.

The body of a person with cerebral palsy is full of contradictions, so her wheelchair must be, as well.  It has to be strong yet flexible, adjustable but sturdy, supportive without being too heavy.  And on top of all that, it can’t look too atrocious.  What you end up with, this thing we call a chair, is actually a collection of so many parts that the inventory sheet is three pages long.

Chloe’s physical therapist and the wheelchair guy have different opinions about what headrest works best for her.  This one has a strap across the forehead and lateral supports along the jawline, but oh, that strap always slips around and by the way, it’s made of three different pieces so there’s that much more to break.

“Sorry to muddy the waters,” said the wheelchair guy.

“Oh don’t worry about that, ” I said.  “They’re always muddy.”  Maybe he thought I was getting overwhelmed by information, but like any practiced writer, I know how to ignore the superfluous details, delete the stuff that doesn’t work, and focus on the main idea.

“So whose opinion did you go with?” asked a friend later that day.

“The same one I always go with,” I said.  “My own.”


Fear of Flying

June 24, 2010

I used to love flying in airplanes. I mean, I didn’t actually love the discomfort, the noise, the waiting, etc, but I loved just hopping on an airplane and getting off in a completely new place. Not any more. Here is what’s involved in flying when you have a kid in a wheelchair:

1. The packing. I have a suitcase that I could literally fit inside. This is what Chloe’s stuff goes in for a trip longer than three days. Actually, it’s mostly diapers, because now that she’s grown into “adult” sized diapers, we can’t just pop down to the closest Wal-mart for a re-up. But there’s also the cans of formula, containers for food and water, extra tubes, medication, therapy tools, blankets for lying on the floor, etc.

2. Food. Chloe is on a liquid diet, because she has a feeding tube. Usually, I make her food in the blender. When we go on a car trip, I freeze it and put it in an ice chest, where it will stay cold all day. On an airplane, however, I have to give her the canned formula, because, while “medical” food is acceptable on planes, I don’t know if they’d let me bring a plastic container full of strange brownish sludge. So we have to stick with the clearly labelled stuff, which causes havoc on the tummy, then switch to better food once we get there. Which means we also have to pack the blender.

3. Security. It takes us an extra half hour to get through security, after explaining the need for all Chloe’s various liquids and the full wheelchair wipe-down.

4. Getting on the plane. You can’t take a wheelchair on the plane. They have these little plane-sized wheelchairs available, but Chloe would fall right out of those. Therefore, we have to carry Chloe and all our baggage down the aisle, bumping every seat we pass.

5. Sitting on the plane. Chloe can’t sit comfortably or safely in an airplane seat, so we bring her old car seat. This means we have to lug it through the airport and onto the airplane (see #4), then put it in place somehow before putting Chloe down. And she can’t sit that well in the car seat, either, so whoever sits next to her spends most of their time repositioning her head. On this last trip, we finally figured out that putting our bags under her feet helps, but then you can’t get in the bags, and they make you move them for take-off and landing.

6. Bathrooms. A fifty-pound child who cannot stand up and has no bladder control. An airplane bathroom that’s barely big enough for one person and has no changing table. A four hour flight. You do the math. And the bathrooms in the airports aren’t much better.

7. The destination. Even if we survive the plane ride, we are now stuck in some new place without our wheelchair van, our special needs car seat, or Chloe’s hospital bed. God forbid we’re visiting people who have stairs in their house, or in front of their house, or who are dying to show us some inaccessible tourist attraction. And then we’ve got the ride home to look forward to!

It’s amazing we ever go anywhere, but we do. And we actually enjoy it. All three of us love to travel, and Chloe is a great travel companion. We just have to remember to take our time, have realistic expectations, and breathe.

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