I could make a promise to blog more
often. But let's face it, I'd be lying. I would like to share some
good news, though, so here's an update on things Amy and Colby.
Colby's new eye gaze machine was
delivered yesterday! Hip-hip-freakin-hooray! Colby's speech therapist
submitted the paperwork back in January. Yes, 5 months ago, and it's
been caught up in insurance and Medicaid hell ever since. Thank
goodness we lit a fire under the eye gaze company's butt. Colby's
health insurance is getting ready to change June 1, meaning we'd have
to start all over with the new company if not by June 1. And the pre
authorization for the device was about to expire May 24. So luckily
we got the thing shipped and here before then. It's a beauty! Thinner
than his old device but the screen in bigger. Colby's speech
therapist, who happens to be the most wonderful therapist in the
universe, made a special trip here today to move all the info off his
old device onto the new one and move the mounting piece off the old
loner device onto the new eye gaze. Oh, much happiness to get this
marked off the to-do list! If we had to start this process all over
June 1, pretty sure I would've had a small meltdown of some sort.
We're making progress on getting Colby
the new (and only) drug to treat SMA. Again, insurance problems. Of
course they denied Colby getting this drug initially. United
Healthcare denies everything initially. Then they said he needed a PT
evaluation before approving Spinraza. Took Colby to Cincy for that
several weeks ago. Now insurance wants further genetic testing on
Colby to see how many copies of SMN2 he has. We've drawn the blood
for that and it has been shipping to Massachusetts for testing. None
of this surprises me. I know lots of other SMA families who have had
to do exactly the same thing to get approval. We're inching our way
closer. That's how I have to look at it. Not sure how the new
insurance change will affect getting the drug approved for Colby.
Guess I need to look into that this week. Putting it on my to-do list
now.
Tomorrow is the last day of Colby's
freshman year! Did I just type that? Colby is a freshman, soon to be
sophomore? Be still my heart. Last day is supposed to be Wednesday so
he would have 3 days left. But he doesn't go to school on Tuesdays so
that leaves 2 days. The nurse that goes to school with him needs the
day off on Wednesday. There is no other nurse through the school
corporation's agency who is trained to take Colby to school. Since I
can't go to school with Colby because I'm a “liability,” which is
such total bullshit, I guess he'll be staying home Wednesday. Leaving
tomorrow as the last day. One more day. I mean, you know, not that
we've been counting down or anything.
I've been keeping this news under my
hat for quite a while, and now it's time to share. We're packing up
and heading on a vaca this summer. We haven't been on a vacation in a
long time, so we're overdue. Where we're going is the most exciting
part. Taking Colby to a special needs camp in upstate New York. Yep,
this crazy mama is packing up her sweet boy and traveling 800+ miles
one way. How will Colby do during the trip traveling that long? I
have no idea. I do know he's the absolute healthiest he's ever been,
so if we're going to attempt a trip like this, I feel NOW is the
optimal time. The best part is we'll be meeting another SMA family
there! They're driving down from Vermont to go to the camp. They've
been many, many times. I'm nervous and thrilled and excited and
anxious all at the same time. So much to get done still! The last
week before we leave will be spent organizing, packing, packing,
repacking, reorganizing, rethinking, packing, repacking,
reorganizing, thinking again, packing again, etc. You catch my drift.
It's so great to share good news.
Things around here are going well. As I type that I hold my breath,
cross my fingers, rub on the rabbit's foot and pray it can stay this
way a while. We have good, dependable nurses. Okay, when's the last
time you heard me say that? The house is still as beautiful and
wonderful as ever. I do kind of wait for the other shoe to fall.
We're an SMA family, no way things can be going this well. That just
doesn't happen, right? Trying not to take the good days for granted.
Thankful for every single moment Colby stays healthy, or “Colby
healthy” anyways. Thanks for reading and checking in on us. We're
blessed beyond belief for sure. If I could only get this goofy rabbit
to mind, I would have a perfectly charmed life indeed.
