Saturday, May 28, 2011

Seating clinic

We went to the seating clinic this past Thursday and it went very well. We didn't get the horrible doctor we had last time so I didn't have to deal with any arrogant, condescending attitudes.

We picked out the Britax Traveller Plus car seat:

I looked at like 10 different special needs car seats trying to figure out what would work best. And to be perfectly honest, being the car seat nerd that I am, I didn't want what everyone else has. I wanted something cool, and different. But lo and behold, the one that looks like it'll fit Charlie's needs best is the one everyone else has. There's probably a reason for that. It's probably great. LOL

We picked out the Axiom push chair:

We needed something that would fold smaller because I cannot afford a van right now, with the way gas prices are. I'm going to get a small car and then get a van in a couple of years, and waiver will pay to have it adapted. Then I can use the van JUST for driving Charlie around and the car for everything else. But until Charlie is about 6 years old, we have to expect to use a car seat and transfer her to a stroller that folds and fits in the trunk. The wheels come off this stroller so it folds even smaller. It has a really tall back, 28" I think.

And we asked for this Omni toilet chair:

I'm sure some people think I'm crazy to try to potty-train a child with disabilities this severe. Let me tell you, I just might be. But that's not going to stop me from trying. And I'm not going to call it "potty-training". She's always going to need complete assistance and I doubt she'll ever be totally diaper free, but even if she just gets her morning pee in the toilet, that's one less diaper she uses and that much less pee sitting against her skin. I think she deserves a shot at it. She's staying dry overnight and she refuses to poop in public. I'm sure she can tell when she's wet, especially when she's in a cloth diaper. She has all the readiness signs except ya know, being able pull her pants down, actually sit on the potty, and verbally express her needs. Ah, well I can help her with all of that.

The medical bed is the only thing I'm hung up on. They'll write for it. But they've never heard of any "good" beds being covered. They said medicaid, waiver AND BCMH only ever pay for the kind with two metal rails that pop up. So, no thanks. I want Charlie to have better protection than that, like rails on ALL 4 sides. And something smaller than 10" slots she can fall through. So I'm going to design my own and have it built. It shouldn't cost too much and I'm sure it'll be worth the effort. I'm thinking something loft-style, only about waist high for the mattress, higher sides, and one side that swings down and is held up in place by slide locks. Pretty simple. We did ask for a wedge to go under her mattress. It is tempting to just put her in a regular bed, but she has her nights (and days) when she wiggles a LOT. Like so:

So she definitely needs rails.


sarah said...

there IS a bed that fits what you need! It has sides, but they are plexi-glass (or a similar material).

check this out

Shauna said...

That's the one I specifically mentioned to them, but they said they've never seen anything like that get covered. The issue is not finding a bed that works, it's getting it funded. They said there is ONE bed that's covered.

I could TRY I suppose, but it'll mean writing letters, making phone calls, ect and even if they do cover it, it'll be 6 months or more before we get it. Might as well take a weekend to build something.

sarah said...

After almost 4 years of fighting for Charlie,you GOTTA fight for her bed too! Have you ever backed down before when there is something Charlie needs? Now just isn't the time--especially when it is something durable like that that she will be using for many many years. Do you really want Charlie to be 10 years old and sleeping in a *normal* hospital bed, or do you want her to be sleeping in that gorgeous sleepsafe bed?...and think of how many other kids will get approved for an appropriate bed once you set the precedent. You can do this Shauna, I KNOW you can :)

I suppose you could quietly build something to hold you over until it gets approved ;)

Cat said...

How high do you need the siderails to be? Could a traditional junior loft bed be modified? Those beds are not as tall, maybe 3' or so at the highest, and they have the safety rails of a regular bunk. Maybe Scott can help you on a weekend to do it, we're building up a supply of tools and we *do* have a pickup truck for hauling. I can ask him about it and see if you like.

Swgoats said...

Medicaid approved our self safe bed. Go for it! And go for the potty training too. Joe potty trained himself for stools. I was dragging my feet on it thinking other goals were more important, but Joe had other plans. So glad C is doing well. It is so wonderful to see our kids making such great progress!