So we picked out a wheelchair...

[MotherWhimsey]

And we picked the zippy zone. It'll have a custom back, custom seat, thigh belts and butterfly harness instead of lap belt (anything around his middle hurts his guts and messes with a few of his tubes), custom head rest (without a "vlad the impaler" bar, woot!), a tank holder (didn't know they could put these on manual chairs with big wheels), 22 inch wheels with 6 degrees of camber so he can't rock it over, light up flashing caster wheels, and the paint is called toxic green. Linden calls it booger green, and boy howdy is it toxic. It looks like anti freeze turned into a wheelchair. He's calling his chair the snot rocket.

So now we just have to wait 6-12 weeks while they build it. I was really impressed with the wheelchair clinic that we went to. They took a really good history and took all his needs (they can vary widely so that makes it harder to figure out what's best) into account and put together a really awesome chair. Or at least I think it will be a really awesome chair.

Plus (on the selfish side) the frame only weighs 14 lbs as opposed to the 44 lbs chair we have now. The back will fold down (they found a custom back and seat combo that could still have the folding option) and the wheels pop off. So it will fit a whole lot better in my car. Right now packing is like a jigsaw puzzle, so that'll be nice when we have a smaller chair to get in there.

It was hard for me to be okay with getting him a bigger chair, so I'm glad it's done. This way we've done our part and have the chair and he can use it when he feels like it. Who knows, maybe it'll make a huge difference and he'll feel a lot better and have less pain. I'd be absolutely thrilled if that happened and it's worth a try. He hates using the chair he has now since he can't move it at all, so hopefully since this new one is really cool looking and he can push himself small amounts if he's stranded, he might be more willing to use it. Plus he's looking forward to getting speeding tickets at school. lol

[ericswifey27]

Wow, it sounds like you have found some great improvements- especially the different belt system and how it is way lighter- yikes 44 lbs sounds really heavy, maybe your back can rest a little easier now!

snot rocket tee hee!

[nextcommercial]

I would have been sold at the light up flashing wheels. The rest wouldn't have mattered. "Oooooh Lookee.....flashy lights!!"

[mekat]

Congrats! I took a peak at the chair and it looks fantastic! I'm sure he will love it and he will be one of the first in his school to get a brand new chair just launched by Sunrise Medical. Alec just received a lime Rifton Pacer and it looks to be the same shade of color. It is definitely a fun boy color to have if you are bored with blue and red equipment frames. Alec is a real champ in his wheelchair now and we only just introduced to the world of self propelling 13 months ago. You might want ask his pt about a loner chair to start working on building those arm muscles while you wait. Alec learned on a really old Quickie Zippie that was rather heavy so when he got his light weight titanium chair he got a kick out of how far he could go and had a great time with it.

[MotherWhimsey]

how long did it take for Alec's chair to come in? I'm hoping we get lucky and get it in 6 weeks because we have a cross country trip to some of his specialists and it's hard cramming all his junk in there with a bigger chair. Probably won't, but it'd be nice if it did.

[workjw]

I met you in the hospital lobby a while back, and we will totally be looking for the snot rocket from now on! Hope this works out well for him!

[pixiekisses]

Oh, it looks cool! You gotta post a pic when it comes.
Congrats!
And 14 lbs. vs. 44 (!).

[mekat]

Turn around times for us in the past;

Quickie Zippie TS folding frame model w/ custom seating- 4 months we were on private insurance

Tilite YRA w/ custom seating - 6 months Alec only has SSI medicaid. They knew there turn around time for DME approvals was too long and were trying to correct it but we were still significantly delayed getting approval.

Rifton Pacer - 2 months still only have SSI medicaid for Alec. They have finally revamped their DME approval process so the turn around was very quick IMO but the pacer had nothing custom just factory parts.

The answer for you really depends on the average turn around time for your insurance. If you are private you will have to ask them directly but if it is Medicaid the DME probably knows because they usually process a lot of Medicaid orders. It also depends on if you get approved the first time through, Alec has never been denied an equipment order so who knows how long an appeals process would take. It also depends on if your child has more then one insurance policy. It can take more time to get approval from both policies. Both DME's we have worked with only order and build after they get approvals. I personally prefer it that way because I rather not risking getting stuck with a large bill since equipment can run into the thousands. Alec's first wheelchair was billed at $4,000 and change (don't know the actual insurance pay out was but I'm sure it was lower). I do know some DME's will build and place orders before approval but I have never worked with any who do and am unsure of the process.

[starlein26]

Hey you! I've been thinking about you guys...how's his new wheelchair?

[MotherWhimsey]

still not here yet!!!!!! Last I called they had all but one of the parts and it hadn't made it all the way through insurance yet. It's annoying because it's taken for freaking ever!

[starlein26]

Just seeing this. For some I'm not getting email updates, . About the wheelchair...how annoying. Does your other chair still serve him/you well?

[MotherWhimsey]

Yeh. And he can walk, just not for much distance. He just looks pretty silly stuffed into the Kimba now. We've totally just worn it into the ground. The head rest is flopping and wobbling all over the place and we've lost so many bolts that it's a wonder the thing hasn't just fallen apart.

I did hear from them monday I think. They said that the third party said that the whelchair was declined but the spoke guards were approved. I spent a while calling the insurance company and apparently the third party got it backwards. So I'm going to call back tomorrow. If they've gotten written proof that it's the way insurance told me then we can schedule a fitting and pick it up. I hope it won't be too much longer!

[MotherWhimsey]

Just talked to the wheelchair clinic, we're going to go pick it up on Nov. 4th.WOO HOO!

[starlein26]

That's great! We need a new chair so let me know what you think!

[starlein26]

Did you get it yet?

[MotherWhimsey]

Yes and it is AWESOME! I haven't taken a picture of it yet, I'll see if he'll cooperate when he finishes flushing. It is very very toxic green.

The independence is amazing. He's always been teathered to me by his o2, but now he has it on his chair and he can just wander off. He's loving that! I think it might do me in though. Today he got halfway down a ramp and was doing just fine but suddenly decided to "fly" down it by putting his arms out and just took off so fast that I didn't have time to catch him. Unfortunately there was a brick wall at the bottom. In boy vs brick wall, the brick wall always wins. He hurt his foot and I'm hoping he didn't break it or anything. The independence may very well just do me in though.

He says he loves it and he's doing really really well with it. He can even do a wheelie (he has anti-tip bars so he's really just rocking back onto those) already. His teacher says that it's made a big difference at school so that's a huge benefit. So, so far aside from the wall incident it's been really good.

[starlein26]

Yikes...poor foot and poor mommy. It's always a tough call allowing them independence (or just not being nearby in time to help), knowing that they get hurt so much worse than "normal' kids. SO much anxiety all the time.

I'm glad everyone seems to like it though! Hope you two get the hang of the new system soon.

[MotherWhimsey]

Here's a picture of it. Sorry, it's not a great one... I can't find my camera battery charger so I took it with my laptop.

[starlein26]

Love the chair! And those cool things in the spokes...where did you find those? (And man, he looks so much older these days! What a cute boy!)

[MotherWhimsey]

It's just a clear plastic spoke guard and we stuck starwars wall stickers on it.