Remember a while ago when I was talking about the fact that we needed to figure out a new mode of transportation for Avery? (here) Well, we have come to the conclusion that the best option really would be a wheelchair.
I spoke to Avery's school PT the week before last, and we talked again about the fact the Avery shouldn't be walking to and from the cafeteria. Emphasis on "again" because I already talked to her at the beginning of the school year and told her that very should not be walking any long distances in her walker, and yet when we got her 9 week report card it said "Avery is doing a great job walking one way to the cafeteria every morning" as if that would be something we'd be happy about! So I spoke to her again, and she said "Well, I really think that it's important for Avery to be learning to keep pace with her peers." I told her again that Avery's speed in her walker is not the issue - she can go really fast. In fact, one of the problems is that she goes too fast most of the time and her heels never touch the ground. Frustrating. For some reason, Avery's school PT and I have had the hardest time seeing eye to eye in the 2.5 years we've known each other. Back when we were pushing Avery to use her crutches and quad cane, the therapist didn't want her to use them at school because they weren't safe enough, and insisted that she should be using her walker instead, and now that we are trying this new approach and trying to avoid pushing her body into doing things it's not ready to do, she is still insisting that she should be using her walker, not a wheelchair.
That's right, she says that she cannot in good conscience write a letter of medical necessity stating that Avery needs a wheelchair. Because she can walk. For short distances. In a posterior walker. On her toes. With her knees knocking together.
Why, yes. Yes it is.
So she gave me a whole spiel about how Avery should be pushed into walking progressively longer distances, and that without a letter of medical necessity a wheelchair would cost us thousands of dollars and that even if we could get medicaid to pay for a wheelchair for Avery, most places in Roanoke don't even accept medicaid anyway, yada yada yada.
I personally know of at least two CP children who can walk without any assistive devices who still were approved for a wheelchair because their CP makes walking long distances difficult. Back in 2009 when Avery was walking better than she is now, her PT asked whether we wanted to see about getting a wheelchair for her. I instantly said no, foolish woman that I am! I was still in the mind frame that we should be making Avery walk, and I thought that a wheelchair would just be an excuse for her to stop walking. Anat Baniel therapy has changed my mind about that. The way that Avery walks now is destructive. It aggravates the very issues which make walking so difficult for her in the first place. I have a sweet friend who grew up with the same kind of CP as Avery has, and went through all the traditional therapies/surgeries which are normally recommended. She walked independently until she was in her thirties, and then the damage which her gait had been invisibly doing to her spine suddenly became apparent and she will now never walk again.
There is no denying that Avery's gait is extremely damaging.
ABM therapy is all about quality of movement. It is about helping Avery learn how to comfortably move her body, the way that most of us learn so effortlessly and naturally as babies and toddlers. It is about teaching her brain to communicate with her muscles, and helping her to realise that movement has purpose, and that it should be enjoyable. It is about moving naturally and comfortably. It is not about forcing her body to do things which it is not ready to do.
A wheelchair will allow Avery to still enjoy the independence of going where she wants to go by herself, and will also allow her legs to calm down and stop working in a way which is damaging and destructive. It will mean that in between appointments she is not undoing the good that her therapy is doing. Ultimately, it will mean that when she does walk independently, it will be as comfortably as possible, rather than as soon as possible.
As for the wheelchair itself. Obviously, the sooner we get one the better. If we were able to get Medicaid to cover the cost (which I think is probable, since she needs one, her PCP would write a prescription, and her therapist would write a letter of medical necessity) then it would take up to 6 months to get it. I have heard that you can sometimes get "loaner" wheelchairs for the interim. My friend Christine also said that with her wheelchair, if there's ever a problem with it, it can be really difficult/expensive to get it fixed if it's not covered by medicaid. Especially if it's custom made. Also, if we got it through medicaid she would be properly measured and fitted for one.
My friend Patty also let me know about FREE, which is a non-profit whose mission is "to help provide mobility related rehab equipment to enhance independence and improve quality of life." I've been looking at the whole application process for that too.
It's all a lot to think about. Last week I was feeling a huge weight of stress and pressure and worry. But I really feel that we have made the right decision, and the only thing to do now is to figure out the best way to actually get hold of a wheelchair which will be ideal for Avery.
The thing with Avery is that she's not so physically involved that she's going to require custom made support cushions and all the fancy bells and whistles. She just needs a manual chair that she will be able to sit in and propel by herself when we go out. She will still be crawling at home, as she always has. The chair will go with her to school, so it will need to fold up and be reasonably lightweight so we can get it on and off the school bus. It will need to be easy for her to get into and out of by herself so that she can still enjoy the independence of being able to get down and crawl around whenever she wants to.
Here is the chair I had decided on:
It weighs less than 30lbs, folds to a width of 11", has flip back armrests and swingaway, detachable foot rests. I also found it for $280!!
However, after measuring Avery we realised that she needed a seat width of 12", this one was only available at that price in the 14" seat width. The company that makes it has apparently discontinued the 12" model, so the buying options are much more limited.
I have found the 12" somewhere else for $400, which is the same price as this one:
It has more options for everything from seat width/depth, colour, upholstery, arm type, casters, wheels, front rigging, knee-to-heel range, etc, etc. However, it weighs a couple of pounds more, the weight capacity is half of the other one (still 125lbs though), it only has a 5 year warranty (rather than limited lifetime), and I can't find anything that says how well it folds up.
So I just don't know. Decisions decisions.
I'll be seeing our PCP tomorrow for Oliver's 4 month check up, so I'll ask him about a prescription then. Then we really need to make a decision about what to get/how to do this.