Finally!!

[andromeda31]

Hi!

Just have to share my happiness! Got some good news today *for a change*! Caitlin's new wheelchair is coming tomorrow after school!! :D I am so excited for her! The one she has now we got when she was 2 (now 7!). It is WAY too small for her but it has taken 7 months to get this new one! We ordered it April 16. Crazy huh?! She tells me all the time that her butt hurts from sitting in the current one and it also pushes her posture in a bad way since the backrest can't go back any further and needs to. She sat so much better when we were able to recline the backrest a bit, right now it is at about a 90degree angle cause we needed to make more room for her long legs. I am so glad she will be able to have a chair that will fit her good. I think it will help her in school to pay attention better since I can't imagine sitting in a bad chair for all the time she has to (school, riding bus, eating etc). Hooray!!!

Lisa O.

[grace]

that's great. we're happy for her too. way too cute photo by the way.

[Paul from Australia]

Hooray indeed :)

That is very exciting news. Time for the wheelchair dance *boogie *boogie *boogie

She will be so much more comfortable and so much more response. You just wait and see.

Paul, Alison and Grant the champ.

[Denae]

YEA!!!

I can't understand WHY it takes so long for our kids to get this stuff approved and delivered. It took about 6 months for Ri to get her first chair.

[wheeliebird]

Yay!!!!!! :D You'll have to take a picture of her in her "new wheels" so we can see it!!! :) That is outrageous how long it takes to get things like this!!!

[andromeda31]

Hi-

Ugh! It is here, but sitting in my garage right now. The seat is too low for Caitlin to sit at our table. :confused: Shouldn't that be a thing they check before?! So they are going to order different casters in the front little wheels, 8" vs 5" and then raise up the seat. So poor Caitlin is stuck in her old one for a while yet. Plus yesterday after the wheelchair people left, I had to take Caitlin to the chiropractor after supper so I took the new chair along to show it off and have her look at Caitlin in it to see if she saw anything that needed adjusting on it. Well she noticed that the seat was not even across the front (which I had noticed but it was too chaotic when the w/c people were at my house with the boys running around in the way-couldn't think!)....they have it so it 'accomodates' her uneven leg lengths (from hip surgery). But because it is like that she said it is making Caitlin tip her pelvis in a bad way making her spine torque around which would lead to more bad in the future if left that way. So she suggested getting a seat that is even across the front. So I called w/c place right away this morning at 8am and left a message. Got a return call back later and the repair guy said the lady who is our rep was off til Tuesday so she hadn't ordered the wheels yet so it will be easy to change the seat out too (I guess, he won't be sure of that til she gets back). But ugh, more waiting!!!! :( Aside from the bad pelvis position, she did look a lot better in the new chair, it is the right size for her vs now seeing her back in the old one where she is now even more clearly too big for it!

Also, I got a phone call this evening from her neuro that they want to start her on Keppra in addition to the depakote and see how that will work for her. So I am kindof numb over that. She was really nice (and it was the doctor even not her nurse who I usually just speak with the nurse on the phone!)...she said if was didn't see any results with adding the keppra that she would probably want to hospitalize Caitlin and try stuff thru an IV to get the seizures under control. Raising the depakote so far really has not done anything that I have noticed. Right before she called me I had noticed 2 drops. I am thinking of so many more questions now, but at the time, my mind just kind of shut down after hearing Keppra with all that I have read here and in books about 'keppra rage'. I did ask about that and she said 10% have trouble with it....so of course Brian & I were like (saying to each other) that oh goodie we'll be dealing with that now I guess! She had her first dose tonight at supper and she seemed to get really tired after, but not sure if it was just because of it being the end of the busy week. We'll see I guess. I almost wish they would admit her or something and tell us why this is happening. Ever since she came home from that shunt revision in August she has not been right. :(

Lisa O.