Monday, January 17, 2011


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.


Anonymous said...

Violet is defintely one of those children with CP that can only walk short distances and that is why we got her wheelchair too.

Of course for her we still want build up her stamina and get her walking more and more as you do with Avery.

I think it's definately something important for Avery with her gait issues.

Those wheelchairs look good! It's hard to know which way to go isn't it. Even though we did a fundraiser and also donations to get Violet's custom chair, it is going to be so costly when she needs it to be grown out as she grows.

Hope you can get some advice which way will be the best to fund it. That site does sounds fantastic!

Anonymous said...

Hi Josephine,

I'm afraid to say that the UK is not better in providing wheelchairs!!! One of my pupils who at the time was 7 was issued with a wheelchair that was an adult sized one which he has had to have lots of padding for so that it lasted him for life!!!!
Will be interested to see what you end up with. I will say from experience, have a go at pushing them, are the handles the correct height for you or do they give you back ache after awhile!!! The 14' seat depth could be resolved by having a small padded insert - especially as I'm guessing Avery will be growing. It will also give her more comfort as the backs of the chairs can be quiet thin


Anonymous said...

Ours was custom made at 11" and it was taken back today to be changed grown out to a 15".

Josephine said...

Sarah, I actually thought about Violet when Avery's school PT was trying to tell me that Avery didn't need a wheelchair. Craziness.
What does Violet think of her wheelchair now that she's had it for a little while? Avery's still not too thrilled about the idea...
Nicola, that is just insane that a 7 yr old was given an adult wheelchair!! How hard must it be to reach and push the wheels when you have to reach so far to touch them?!
Thanks for the advice.

SuzanSayz said...

Apparently the PT knows so much more than you. As IF?!? Don't they realize that as the parent you are far more interested in what is best for Avery. I wish you the best and will have you and Avery in my heart. Thank goodness for Miss A that she has such a wonderful, loving mother on her side. It really is up to we parents to be the first line of defense.

Anonymous said...

She has been really great with it actually. I think all the negative comments that other kids use to say about her in her disability stroller makes her somehow realise that the wheelchair is the next step.

Josephine said...

Susan, it's not even just that she thinks she knows more than ME, it's also her other (and more important!) PT who says that she needs it! Ah well...I;m working on it. I have a prescription for one now...
Sarah - does she get negative comments about the wheelchair too? I hate that kids are so mean...I can't even THINK about Avery starting regular kindergarten in the autumn....fills me with dread....

Anonymous said...

Not at all! People still look but not as much and we have had no negative comments as yet.

I know what you mean, Violet starts big school next week!

Angela said...

Hi, I hope you don't mind me giving my opinion, I found your blog through Bree and Wyatt's blog. Please just know that my opinion is just from my experiences. I am an adult with CP. When I was little doctors didn't really worry about my walking (even though I walk awful, my heels don't touch the ground, walking on the sides of my feet, shuffling my feet. etc)they felt as long as I was mobile it was fine. Well now I am 26 and my body can no longer handle the way I walk without being in a lot of pain. I finally found a doctor that is helping me and I start extensive PT to retrain me how to walk correctly and to retrain my brain to do things correctly instead of just adapting them to my disability. It worries me that your PT does not see the damage it can do to your daughters body later if she does not walk correctly and they just continue to make her do that. Just because you put her in a wheelchair doesn't mean she can't walk sometimes...just make it shorter distances and make sure she is walking correctly.

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