Boy Meets Chair

It's been 13 months, 5 insurance denials (at least), and three phone calls with the governor's office (!), but finally, the boy got his wheels. There are still some tweaks to be made in terms of his seating and joystick placement, but behold the beauty of coordinating boy/girl power wheelchairs:






And note that even photographing them from the back, Kyle is still on the left. Have you noticed that? I almost always put him on the left. I don't think I'm OCD or anything, but the boy being on the left is certainly a recurring theme with me. Also, I am left-handed. Also, the girl is left-handed. The boy is a rightie. I don't know what all this means--you pick it apart for me because I'm already confused after just writing this paragraph.

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So, in case you're joining us for the first time, my twins just turned 3 years old and have a neuromuscular disease called Spinal Muscular Atrophy. They didn't show any symptoms until about 9 months of age, and it took 6 more months to get a diagnosis. SMA kiddos are super smart and social, but their bodies are weak. This is a degenerative disease. It is terminal. There is no cure. That bears repeating: My twins have a terminal disease, and there is no cure. But there are some nifty ways to make life more normal for them, and $65,000 power wheelchairs are one of those ways.

We also have a daughter about to start the first grade, and she does not have SMA--however, she does have what I like to call 'bout-to-be-terminal-sassyness. But my middle name is patience, so 'we shall overcome'. No worries.

Lauren got her chair in January, but Kyle's chair inexplicably got delayed 6 more months. The powerchairs are the reason why we're moving to a different house. We closed on the new house last week and hope to be moved in by the time school starts next month. We're also shopping for a wheelchair accessible van so that we can, you know, actually go places with their chairs. We're looking at shelling out well over $50k for such a thing, which completely blows, quite frankly. If I spend $50k on anything, it better include some sort of kick-ass tummy tuck for Mom, amiright?

So to those who stuck with me during this year-long ordeal, thank you. I know that complaints are not very interesting to read, but you hung in there and I high-five you for that. And my blogging frequency may be affected with the big move we're about to embark upon, but I hope to get back to the regular funny shortly after that. xo

p.s. the Jerry Lewis MDA telethon will occur Labor Day weekend, somewheres around September 5th, 2010. Watch the blog for some potentially interesting updates on this. Nothing is finalized yet, but let's say that the twins and TV cameras could be involved. Shhh, you didn't hear it from me.

My Million Dollar Idea! Golfers, Keep Reading.

Summer golf league is off and running, and Jenna wants to golf with me sometimes. That's understandable. It makes me sad, though, that golf can't be a family activity for us because of the twins' disability. Chris golfs (he's better than me) (which actually isn't saying much), Jenna could golf with us, but the twins don't have the arm strength or hand dexterity to swing a club.

A-ha! I have an idea--mark the calendar.

What if there could be a way to mount our golf bags on the twins' powerchairs? Can you imagine! The twins could be the only three year olds in the world who understand "the 90 degree rule". They could get so good at observing my game that they suggest which club to use at that tricky spot when I'm 120 yards from the green (they'll know the distance based on the golf Garmin that I shall mount to the arms of their joysticks) and on a bad lie--4? 5? 6 iron? It's a crapshoot with me at that distance and a cruddy lie, really.

There must be a way for this to happen. On the Permobil C300, it's easy--just insert the clubs on the platform behind the seat (or rather, prop them up out of the top of the opening if necessary), and secure them with some sort of hefty belt. But the K450 presents a dilemma. There is no real platform behind the seat of the K450, so that only leaves the sides. And there's no legitimate platform on either side on which a bag can rest. This might require a DIY add-a-platform-to-wherever-it-will-fit project. And the bad news is that I did not take shop class in school--I was a violinist, so I gave up a class on practical, real life experience in order to goof around in the band room. I might need some help.

I emailed Josh the wheelchair guy tonight, and he promised he can find a way to custom-mount my bag on that K450--sweet! But I'm not sure I believe him...

But hey! I'm a mom! And a mom of twins! Is there anything we can't do? Any problem I can't solve? I think not. So, I give you this:

C300

K450

Done and DONE!

Sometimes I'm just so awesome that I amaze even myself. You'd think I'd be used to so much Awesome by now.

Dear World, meet our new wheelchair. And it's PINK!

STOP. THE. PRESSES.

We accepted possession of Lauren's new pink powerchair today. Oh yes, you heard me--we own it. Own. It. No 'temporary' demo chair; no 'this isn't quite measured to her specifications'; no 'I'm going to need have this back soon' business. It is OURS. Or hers, rather.

For the wheelchair savvy/curious crowd: It's a Permobil pediatric K450. http://www.permobil.com/USA/Products/Pediatric/K450-MX/

This behemoth weighs 311 pounds, cost somebody (not me) USD$32,000, yet the "owner's manual" is as thin as a pamphlet. That's humorous, right? if it wasn't MY responsibility to figure this thing out. And the best part is that the "troubleshooting guide" for this thing has 6 rows. Because surely only six confusing things will happen with this thing. Not.

Anyway, so let me share: This chair is four feet long and 2 feet wide (ugh). This wonder of mobility technology moves 5.2 miles per hour (she'll be like the Wii Fit doggie who sets my pace when I jog). The seat tilts back electrically, and with the seat-to-floor funtion the seat itself raises up to bar height (you know, for all the clubbing she has planned) and all the way down flush with the ground (think: preschool circle time). It can be driven while sitting as low as 2 inches from the ground. It has headlights and blinkers. And...what's this I'm reading, I have to check the air pressure in the tires "at regular intervals"? Are you kidding me? I did not sign up for that. I don't even check the pressure in my own tires. Sigh.

But the best part is that it is hers. And pink, don't forget the Pop Star Pink. Yeah, the color upgrade surcharge of $500 was thrown in 'for free'. I adore you, Josh from Permobil, and forever thank you for the free paint job. xoxo. To the rest of the world, I introduce...hey, wait, I need a nickname for this chair? Buttercup? Greased Lightening? Pepto-Bismol-a-licious? C'mon, I need your creativity, folks.






Ahh, don't get me wrong, we are beyond thrilled to finally have this chair. I am so relieved that all the Medicaid budget cuts and everything else haven't gotten in the way of my baby girl getting the equipment she needs to start really living her life. I am full of gratitude to a) Josh @ Permobil and b) the taxpayers of the State of Arizona.

Another quick update--the house we've been waiting four months to buy was scheduled to foreclose today, again. And today, again, BofA has extended their foreclosure date another 30 days. We're starting to wonder if flat out foreclosure on this family would be more helpful to us than continually extending the date. Because Lauren can't even use her new chair until we move out of this house. Sigh.

Lauren's First Powerchair

I've mentioned in the past that SMA overwhelms me sometimes. This week is another one of those times, I'm afraid. It's been a rough week in the SMA community. I'm trying to shake off this sour attitude, but for now, I thought I'd share a fun power wheelchair update. Lauren's chair has arrived! Actually, we're still waiting on the chest harness to be delivered, so the chair is sitting in a warehouse in Tempe at the moment. But we got to 'meet' her chair this week, and I am so psyched. I'm trying to decide on a name for her chair. My old favorite car was named 'Buttercup', but this sassyness-on-wheels needs a hipper name. I am accepting suggestions.

For those interested, the chair is a Permobil K450, and in Pop Star Pink, of course. Arranged for by my favorite wheelchair dude, Josh, to whom I've previously devoted a blog post.

And yes, this is probably the most expensive mainstream powerchair anywhere. I'm pretty sure that my college degree cost less, seriously. Without further ado, meet Lauren's chair.




Also, if you want to know why Lauren regularly points at the camera and calls it a pirate, it's because I use a Flip and there's some resemblance to an eyepatch. Well, I guess there is if you're two.

Heh? What was that? I don't understand "Approved"?

We got an email today from our physical therapist, who was forwarding an email from the Permobil (wheelchair) sales dude, claiming that Lauren's powerchair has been approved by insurance.

Well, the last I heard, they denied it because she requires an attendant-control unit, and I didn't even appeal that denial. And that was months ago. I had planned to start over with the whole process in January, now that we have plenty of video footage showing how easily they can drive and manipulate the loaner chair that Permobil temporarily gave us.

In any case, our beloved Permobil rep will be here on Monday to take new measurements for Lauren's powerchair. I still don't believe we'll get it. Good, complicated things don't happen to good, normal people. Usually that would require Al Gore to step in and casually suggest-slash-encourage it. Gasp! Maybe that's what happened! I should find out soon and will of course keep you posted...

p.s. No word on Kyle's chair. They're two different kids with two different mounds of paperwork, so we never expect something like this to be approved for them both at the same time.

p.p.s. Anyone know how we can get our minivan converted to transport two powerchairs?

p.p.p.s. Anyone know someone at Bank of America who can fast track our current contract on a pre-foreclosure house? It's a perfect house for wheelchairs, and it's been "pre-foreclosure" for weeks. The final foreclosure date is next Wednesday, which means our contract gets flushed down the toilet if it's not approved by BofA by then, and we are again without a house to buy. I need room for these wheelchairs, yo! Make it happen!

Dear Mr. Permobil

Dear Josh the Permobil Salesman,

Thank you for loaning us this $25,000 wheelchair. You didn't even check to see if our home security alarm system was truly functioning before you let us keep it indefinitely--you're either very trusting or just stupid. I think you're just trusting, for what my opinion is worth. Because you're smart and adorable and I can't call you stupid until I know where you went to college (please don't say Ole Miss or Arizona State).

So I have like ten square feet of space inside the house for the two year olds to try out your chair. As it turns out, the chair we really want them to have is the more expensive chair, but it's good that we have this "cheapie" to practice on.

I'm writing to you because of the weather. They cannot drive this chair inside my house. As it turns out, I value drywall which is intact, with no holes. A serious bummer for my children driving a $25,000 demolition machine. So they can only drive it outside. On a cloudy day. When it's less than 110 degrees. Which means they've had a total of 10 minutes in the last two months to spend in your chair.

If you could spare this ridiculously expensive robot of a chair until November, that'd be great. You can rest peacefully with the knowledge that a) our security system indeed is funtional, lest a burglar spy your wares inside the house and think he could steal it for himself and b) my husband would cook for you, as a token of gratitude for all this time you've let us spend with your BMW I mean your chair.

Have I mentioned that this chair is only barely less expensive (by about $3k) than the phat minivan in my garage, the one with the electric everything, leather seats, and onboard DVD player? And I have I mentioned that for $25,000 your chair at LEAST could have a DVD player? They're like $79 these days, FYI.

Lots of love, kiss kiss.
Your next paycheck,

Cassandra Byrd

p.s. your chair also sometimes serves as a $25,000 clothes line. Bathing suits and towels have been known to congregate, and dry out, on your chair. I'm sure you don't mind.