Spinraza: We've made baby steps forward
with getting Colby the only FDA approved drug to treat SMA. We did
the extra blood work needed, involving a peripheral draw for Colby.
In other words, they had to “stick” him and get his blood through
a vein and not his port. Not a simple task, as Colby is a horrible
stick. The staff at our local LabCorp were fabulous and patient. They
were able to get his vein accessed on the 3rd attempt.
Colby's PT/PTT/INR levels were all within normal limits. So,
Neurology said they would send the referral to Interventional
Radiology so that Colby could get on the schedule to start receiving
injections. The Neuro nurse did indeed send the referral last
Wednesday; however, the neurologist hadn't signed off on it. This is
what I found out today when I called to follow up. Hopefully the
neurologist signed the referral today. I'll be checking with IR in
the next day or two.
Power chair: Colby is due for a new,
shiny, fancy power chair! Insurance will pay for a new chair once
every 5 years. Doesn't seem that long since he got his current chair.
But hey, if it's been 5 years then heck yeah, let's do this. There
are 2 companies we could use in Louisville for the chair. They are
bad and worse. I refuse, and I mean refuse, to use National Seating
and Mobility here in Louisville. Their customer service sucks at
best. Yeah, I said it. They're horrible! We've never used Numotion
before, and unfortunately, I haven't heard good things about this
company either. I asked several SMA families and PT's their
experiences with them. None were favorable. But that's who Cincinnati
Children's suggested we work with, so I'll give them a try. Fingers
crossed I'm not blogging about how much they suck in the the near
future. Wednesday a Numotion rep will be here to access Colby's
needs. I've been making a list of everything I like and dislike about
his current chair. I'm kind of stressed. I want to be sure we get the
best possible fit for Colby because like I said, he'll have this
chair for the next 5 years. Then on Thursday we'll go to Cincinnati
Children's Perlman Center to meet with their PT and this Numotion guy
to firm up the wheelchair specs. Then we wait. And wait. And wait for
paperwork to get submitted, insurance to approve or deny, etc. It'll
be months before he actually gets this new chair. Oh how we hate the
waiting.
Eye gaze: If you remember, Colby got a
new eye gaze device a couple of months ago. I've been trying to do
better at getting it in front of him and having him use it more. Yes,
I could be doing even better. Baby steps, ok? We used some of his
birthday money and got him an Amazon Echo. We love it! His speech
therapist has programmed several commands on Colby's eye gaze so he
can use the Echo. For example, he can choose one button and his eye
gaze will say, “Alexa, what's the weather today?” And poof, the
Echo turns on and Alexa tells us the weather. Pretty cool stuff. We
also did the coolest thing with Colby's eye gaze a couple weeks ago.
We made a phone call! How cool is that?! His eye gaze has Bluetooth
so somehow (I'm not a technology person for sure) his speech
therapist synced her phone to his Bluetooth on eye gaze. I went in my
bedroom and closed the door, and Colby called me on my cell phone
through his eye gaze! It was amazing! He could hear me through his
eye gaze talking to him. He has programmed buttons for this
application, too, so he was telling me stuff like, “LOL, how are
you,” etc. Currently Colby is sitting up in his chair with his eye
gaze in front of him. He has turned on the DVD player, played the
Spongebob disc in there, and is watching it in fast forward. Don't
know why he likes to do this, he just does. Old habits die hard I
suppose.
School: Colby will not be starting
school on Wednesday. As I mentioned, we're going to Cincinnati
Children's on Thursday. The appt is very early, so we're going up Wednesday evening and getting the driving out of the way. So that
really leaves Wed and Thurs out for school. Plus, the nurse that
attends school with Colby is still out with a broken wrist. For
another 4 weeks! So I've talked to the school nursing agency, and
they are working to get another nurse to go to school with Colby for
the next few weeks until Nurse Broken Wrist returns. Honestly the
school thing is totally up in the air right now. Playing it as it
comes along. What other choice do I have?
That's enough updating for now. I'll be
so glad when the wheelchair is ordered, the Spinraza is scheduled,
and they find a good nurse to attend school with Colby. Then it'll be
on to the next group of items needed and/or phone calls to be done
for this high maintenance sweet boy.
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