Next month, it will have been a full year since we started the process to get Namine a new wheelchair. During that time, she has grown. We’ve written more than a few times about how much she’s grown, and the year’s delay in getting a new wheelchair is further evidence of that.
Getting a new wheelchair is usually an exciting time for Namine. In many regards, her equipment needs have diminished. One need has not: her need for a wheelchair is more evident than ever. She is active in sports, and living in Wisconsin requires her to plow her wheelchair through snow just to get in the car.
It was an unfortunate miscommunication that led to our initial disappointment with this morning’s wheelchair delivery. There were no handles, seat belt, or tire guards on this model — essentially a longer and slightly wider version of her current one — and the tires were not solid rubber but filled with air.
I want to take a moment to reiterate what we’ve had to repeat a few times for the folks responsible for building Namine’s wheelchair. Air tires are not suitable for a primary mode of transportation, especially for a person as active as Namine. If she were to get a flat tire, she wouldn’t be able to use it at all until we could fix it, patch it, or replace it — like driving on a flat, it could cause permanent damage to the rim.
If you follow this to its logical conclusion, Namine having air-filled tires on her main wheelchair would also require us to carry with us a “go bag” of sorts: containing tire patches, an air pump, a spare tire (or two), and other equipment for flat tire emergencies. For these reasons, solid tires are a must.
As it turns out, the reason Namine’s new wheelchair didn’t come with things like a seat belt or handles was because she was enrolled in a program called “growth chart.” This meant that the wheelchair frame would be replaced as Namine grew, while its attachments would be moved from one to the next: things like her seat belt, handles, and tire guards.
The tech who delivered Namine’s new wheelchair understood our concerns about the air tires, so when he moved the other attachments, he swapped out the wheels as well. Unfortunately, all this meant nothing because of one other problem: the length and width of Namine’s legs and hips, respectively.
The growth chart program allows for replacing the current frame with a new, larger one. Unfortunately for Namine, the replacement frame may either be longer or wider, but not both. The more obvious need is length: her left leg extends a full four inches past the seat cushion of her wheelchair. The new frame is longer, but (due to the growth chart program) was not accompanied by a longer cushion.
There is a deeper issue here, beyond comfort — which itself is no small matter, given how much time Namine spends in her wheelchair. Her left leg rests on the cushion exactly where she has a scar from that fateful second club foot repair — the very same that almost ended in her losing that foot. Since then, Namine has (and likely always will) experienced poor circulation to it. In the years between, she has experienced pressure sores and other complications. Any new wheelchair must be long enough to accommodate the extra care that her left leg requires.
There is also the need for a wider frame, due to Namine’s hips. Her having caudal regression syndrome (with femoral facial syndrome as the core diagnosis) has resulted in bowed femurs, with the right being more pronounced and splayed outward. This results in her needing more width when she sits, simply due to the natural way her hips and legs are positioned.
As I mentioned, it has been nearly a full year since we started the process to get Namine a new wheelchair. She has grown considerably in length in that time, such that this new wheelchair is — not to mince words — simply unsuitable. For that reason, the tech took the new wheelchair back. He also took Namine’s current wheelchair because it took so long to transfer attachments, so now she is without an everyday chair until sometime next week. (She still has her sport chair for tennis, so she will still be able to play.)
The difficulty now is starting the process to get Namine a new wheelchair all over again. The first step will be to get her new measurements, taking into account the fact that she will continue to grow (darn kids and their growing 😉) and — fingers crossed — hoping that the process won’t take a whole year this time around.