This month has been a giant fail for Maggie's various equipment needs. Some of that is my fault, some bad luck some design problems and some chronic failures. No matter what the reason, the problems have been annoying and inconvenient to say the least.
On March 1, I cracked up the van which is an extremely important piece of equipment for Maggie. That was in the shop all last week and we were car less. But they did get it back to me last Friday afternoon which was twice as fast as the other place would have had it. It was expensive to fix, but I have insurance and my outlay was limited to my deductible. It is shiny and new looking and I'm really looking when I merge so I can keep it that way.
But the car was only the beginning. Even thought the car was back Friday, in time for Spring Break, we were only able to use it on Saturday for an outing. We haven't gone anywhere in it this week because her wheelchair broke Sunday morning. Steve did an excellent job of stabilizing it temporarily, but it wasn't really safe enough to go in the car. Her physical therapist found some replacement tubing we could use. A repair guy from National Seating and Mobility CAME TO MY HOUSE yesterday and repaired it. That is excellent service. We can finally hit the road today.
In addition to our mobility woes, we have been dealing with Maggie's new dynavox, which arrived on March 6th and set up a few day later. The excitement of that was tapered by the glitchiness of the program and some design flaws that make it difficult to work with the wheelchair. Apparently there is a "fix" for the software problems but we just have to live with the design problems. You can imagine how pleased that makes me. I spent a week trying to get someone to acknowledge the problem - which they seem to think I was making up. I repeated the issue a dozen times saying it seems like it was not designed for someone in a wheelchair. After telling me it was my imagination and there was no problem, I hear, "Oh, this particular device was designed for an ambulatory user". Uhhhhh. Isn't that the same thing as NOT being designed for someone in a wheelchair. Once they "got it" they basically said it's too bad for us. Man, for the amount of money they charge, you think they might be a bit more accommodating.
The lift system we have in the house has never worked right and while I can't attribute that to the month of March, it is another fail. I spent a few hundred bucks to fix it, and it only lasted a few weeks. I'm not sure what to do about that. I don't want to throw good money after bad, but I have to do something. It is getting more and more difficult to lift Maggie in and out of bed.
Now March is drawing to a close and the car and chair are working and we will get the software issue fixed for the dynavox and, because we don't have a choice, will learn to live with the other problems. The lift remains a conundrum, but it is on my list for April.
April is a month for Spring flowers and chirping birds.We can certainly deal with a busted lift.
Here are the lovely Spring Flowers I received last night for participating in a parent panel at UCSF. How can April not be better?
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