[momraine]

What specialized equiptment do you have in your home for your child and what is covered or not covered?
I'll start

2 manual wheelchairs - one paid for with insurance (took six months) and one came home with ds from Poland.

1 cool power chair - 27,000.00, but we only had to pay 3000.00 insurance paid the rest.

adult power chair - free from a friend, we put his carseat in and it works great as a back up.

forearm crutches - we paid for them used.

Prosthetic legs - provided free by Scottish Rite

Wheelchair van with power lift- we had to pay for it completely.

light switch adaptors (to make them lower) we paid

doorknob adaptors (we paid and added string)

various stools and such (we paid)

dycem for holding things still - we paid for some, but the school pays for what they use.

one handed knife so he can cut his own meat - we paid.

socks and such for prosthetics - covered by scottish Rite.

[Lylac]

Lorraine, you've got quite a list!

L, doesn't require any equipment, other than a benik(brace) for her arm/hand

B, has a wheelchair w/tray..came with him, and we don't use it.
Bath chair..came with him..don't use it.
Convaid wheelchair/stroller..came with him..USE it ALOT

Rifton Pacer/stander..came with him..use it almost everyday.

And of course DAFO's..just got new one's this week..ins paid 100%

My list is nothing compared to yours

[momraine]

OH I know those standers. I used to work in a special education classroom. We had a little boy who had cp, pretty severe. His goal for the year was to hold his head up for five seconds. He was doing so great with that, that when picture day came I had an idea. I put him in the stander, and I used white towels to cover up all the parts of the stander and the tray, and then I got him to hold up his head just long enough for the photographer to snap the picture. His mom was actually a friend of mine and I knew that every picture she had of him he was either laying down, or was in his wheelchair with his head strapped and a the thing around his neck holding his head up. He didn't look anywhere close to normal in any of them. (his mom had an even harder time because he had an identical twin who was fine, so she could see what he would have been like without the damage) Anyway, they used a white background and the picture came out awesome! Since he was wearing a blue shirt the lady even (without charging) airbrushed out the shoulder straps. When the pictures came in, I called his mom to come up to the school. She cried. She was so happy to have a picture of him where he looked so close to normal. He was looking up at me and smiling (he had a huge sweet smile!) and he was holding his head up and his hands were on the tray in a position where you could not tell they were contracted. It was awesome! That mom was so grateful. She told me again years later how much that meant to her and that photo stayed on the wall in thier home.

[Lylac]

Aww that is the sweetest thing!!

[Tudu]

OMG, that is so sweet!

All we have is this wonderful new $2500 stroller that we were shocked to have Medicaid pay for. The Rep was convinced it would not go through even though my dd can't walk father than 50 feet w/o a break. I almost forgot her butterfly AFOs.

[Lylac]

Tudu, what kind of stroller did ya get?

We love B's!!

[SuzBerg]

We don't have a lot of equipment for E. Fortunatley Hubby's work has excellent insurance coverage and then we use her Medicaid as the secondary insurance (Plus we usually meet the deductible very, very early in the year).

So far she just has AFO's (we have polka dot pink ones, though we thought about the butterfy ones Tudu ! But we are waiting on the weelchair which we ordered 6 weeks ago (they were waiting on Medicaid aproval, which I'm not even sure why because I think hubby's insurance was covering it infull ). And we have a Panda Bear Nebulizer!

[Lylac]

B's AFO's are red/black with motorcycles. He's having a hard time adjusting to them. His old one's were hinged at the ankles. But his FM didn't ever put them on him. He has learned to pullup w/out anything on, so he's trying to manuver his legs to were he can do that.

Bless his heart he looks so helpless, going round & round on his bottom, to find the exact spot.

[momraine]

doesn't it stink when we have to make our kids uncomfortable to help them? P has a shallow hip socket, so she had to wear a brace for a while. They found it during surgery, so for a while she had to sleep in this lovely hard plastic hip brace that put her in frog leg position and then she also had a cast on her arm, almost to the shoulder and one on her leg up to her hip (she got that one off twice! and we had to rush back to the hospital to get it replaced as she had a broken and pined bone and was recovering from an amputation of her deformed foot!)
Then the first time I put her prosthesis on her, I was so excited, I just expected her to be all happy too. She had been thrilled to pick out shoes, and to pick out the pink ballet shoe pattern, but then when we put them on, she screamed! She hated those legs for months. Then she would not give up the walker, till I hit it one day when she was sleeping. She screamed and screamed when I stood her up and leaned her on the couch and put her sippy cup and her snack on a little activity table three feet away. I had to leave the room. I sat around the corner and waited. After 20 minutes she stopped screaming and when I went in she was calmly standing at the table drinking her drink, and then toddled over to me. Now, she loves her legs and thinks I am making it up when I tell her how she hated them. LOL

[Abdulina]

We are fortunate enough to have excellent insurance. Bojan's prosthetic legs are always covered. He wears AFO's on the clubfoot. Plus, our prosthtetist will always code it so that it IS covered no matter what. Yeah. We have a nebulizer for our other son. Covered. Our biggest expense is meds. Thousands of dollars a month. I'd say around $3K to $4K a month for meds. We don't pay that but the copays add up quickly.

Now, if we could just get the therapies we need fo rthem. We have to pay $20 each time. Doesn't sound like much but w/ 7 of them a couple times each a week...you get the picture. We are trying to apply for disability. Told some of our kids qualify. A friend is trying to help me get disability for our daughter as she just went through the process w/ hers. It would be great to be able to get them the help they truly need. Anyone else apply for disaiblity and have luck w/ it? I know it's an uphill battle but definitely worth trying for I think. Also, anyone ever go through their local mental health department for anything?

Take care,