Friday, October 10, 2008

About that wheelchair...

Here in Arkansas kids have to be 2 years old in order to qualify on Medicaid for a wheelchair.. It doesnt matter what conditions they have or what medical equipment they have, they must be 2 years old.. We knew this so we started filling out the information in Dec of 2006 knowing that it would be a few months for them to do everything. Alo wouldnt turn 2 until May of 2007 but by having the paperwork in early we would be able to get the chair sooner, because it takes a few months to custom make it.. So... they get the paperwork and deny it.. We knew they would do that becase he wasnt old enough.. So the moment he turned 2 we reapplied.. At this time we also tried to get a stander for him..

For those that dont know Alo has spina bifida and can not bear weight on his legs. The stander was to help him get into a standing position and get him to start putting some weight on his legs.. He has movement in his legs but his legs are very weak and the muscles along the backs of his legs do not work.. When he moves his legs it is because he is working the thigh muscle. Anyway.. The stander was for him to build up strength in his legs in hopes that it will help them get stronger and eventually walk. Alas.. When we applied for the stander and the wheelchair at once they denied both of them saying that if he needs a stander he does not need a wheelchair as well... I guess they expect him to stand up all day long in a stander. What about when we were out and about?? We couldnt take a stander there. We needed the wheelchair to take him places. The stander cant do that stuff.. Anyway.. They got all of that sorted and the stander was approved but the wheelchair was denied.. The reason this time was that he did not weigh enough and that I should be able to carry him where he needs to go.. Are you serious? What about his vent, vent battery, trach go bag, suction machine, oxygen, diaper bag, my purse, and my other kids?? Carrying him was not the problem.. the problem was carrying everything that went with him. So... they get all of this sorted and FINALLY getting somewhere. The plan was to order the wheelchair with a vent tray to hold all of his stuff.. I got the call yesterday that his wheelchair was going to be delivered today. WOOHOOO!!!!!

They came out today to deliver it. WOOHOO!!!! Its the cutest chair ever. Its soft, and comfortable for him, but no vent tray!!!! They have a battery tray for the vent battery but no tray for the vent itselt.. Anybody who has ever lifted an LP10 vent knows how heavy it is.. The vent alone is like 30#.. The vent battery is at least 15#. It is literally the size and weight of a car battery (and those things arent light).. So now, we have a wheelchair but no way to carry Alos stuff on it..

While I am teeved about this at least it is now instead of when he was on the vent all day long. Now, we can go out and not have to have the vent with us, but just a few months ago we had to carry the vent everysingle place we would go. He was sprinting before but not enough so that we could leave the vent in the car. He is pretty much only on the vent at night now but he still has days where he needs to be on it during the day. I just hope one of those days does not come when he is in the wheelchair. I guess we will continue to lug around the double stroller until we are certain that he will not need the vent during the day.

Anyway the whole point of getting the wheelchair was to be able to carry his stuff easier... I guess that just isnt going to happen now.. Im going to go take him for a walk around the block and test it out to see how he does in it.. Ill post pictures and stuff later.


Emily said...

That sounds like such a hassle. Ugh! I'm glad you've got it all straightened out now.

I can't imagine having to lug around a ventilator like that. Is there a reason he can't be on something like the LTV 950 (this was Dakota's and the only home ventilator I've seen). It's about a 1/3 of the weight and so easy to carry around. Like a big laptop.

Kim said...

wow, what a crazy hassle to go through to get the wheelchair! I hope it works without the vent tray or you can get one put on.