THUMP.
THUMP.....
THUMP!
That was me banging my head against the table. Seriously, I am so FRUSTRATED.
It turns out that insurance will not cover the e-fix add on for Jack's chair. The sticker price? Over $8000.00 -- that is MORE than what a new wheelchair, even a power chair would cost. Since insurance will only cover a new wheelchair every 5 or so years....we're basically stuck with a wheelchair that Jack cannot use.
So back to the drawing board and back to square one. I am trying to look into customizing a manual one arm drive for the chair (Kuschall does not have one commercially available). I don't know how far I will get with this idea.
I had Jack at the eye doctor this morning and he wheeled the best he could (in large circles, and backing up) all the way into the toy room! Imagine what he could do with the proper wheels. I HATE this...wheelchairs are supposed to provide independence -- and here's a little boy who wants nothing more than to be independent but has everything stacked against him. His little legs don't work how he wants them to...his one arm doesn't work at all...and now we're limiting him further by making him use a chair that's impossible to use! Can you feel my mommy heart breaking?
So what to do...what to do...I would like to fix his current chair if we can. It's perfect in how it fits him...it's light weight, and stylish....we may end up getting a new chair all together, but do we go for another manual chair? A power chair? How on earth do people pay for this stuff? If we get a power chair will I be able to lift it in and out of our car?
I think, like I said first I want to try to fix what he has....then if we can't, I will start over again.
THUMP.
THUMP.....
THUMP!
I'm so sorry.... I'm emailing you!
ReplyDeleteI completely understand your frustrations and I do not know how people pay for all of this. I am trying to find a used Maclaren stroller for one child (as I can not afford a new one) and the other child needs major house modifications to get out of the house, ie, a ramp. Learned last night our so called insurance monthly cost is going up 25%. HOLY CRAP! Now I HAVE to go back to work as we won't have enough money to make ends meet monthly...unless we want to stop eating or using electricity. Hugs to you! Keep us updated on the wheelchair issue.
ReplyDeleteAlright- DH & I have been talking about this. There is a place here called the adaptive tech center. It has college kids that are engineers. They do all kinds of adaptive things for FREE like toys, communication devices, chairs, etc. Do you have something like that there? I would call around, even the colleges to see if they know. Surely you do since you live near CHOP. Also, have you contacted the department of mental retardation? They have all kinds of grants available here, if you jump through the hoops. They might be able to get you some help there as well. There is also a medical equipment exchange here that you could look for up there. Maybe you could find a used power chair & take the pieces from that? That is all I have at the moment. GL! I know how frustrating it is.
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