Colby's attitude and school performance have been much improved over the last couple of weeks. There for a while he was just flat out pissing me off. He wouldn't try to do anything at school, was being a total butthead. One of his goals at school is he works on driving his wheelchair. He wouldn't do it - did nothing but either a) sit there like a doofus or b) drive in circles/donuts. Also wouldn't participate in anything academic related. Would not answer multiple choice questions on his eye gaze in any subject. The teacher was writing in Colby's communication folder, "He refused to answer his math questions at all today" and "quite stubborn on answering reading goals with 0% accuracy." Really, Colby, I mean really? I was about to pull my hair out. Then poof, it was like he flipped a switch. All of a sudden he has started trying harder to drive his chair and is answering questions on eye gaze. The middle of Colby's school is a big square. Last week Colby drove 2 laps, independently, around the square. This is a HUGE deal, folks, a really, really big deal. Colby has never done anything independently in that wheelchair except run into parked vehicles! Plus he has started to answer multiple choice questions on eye gaze. The other day his teacher wrote, "Colby did a great job answering questions quickly with his ABCD page." Now that's what I'm talking about! I know he can do this stuff. I'm so very proud of him. Everyone is proud of him actually. Good job, Colby, way to put forth effort (about time, sonny boy!)
Today we took Colby to Cincinnati
outpatient surgery for a follow-up ML&B and flex broncoscopy. Basically
that means they put Colby under anesthesia (always scary with an SMA kiddo)
then both ENT and Pulmonary used scopes and went in to look at Colby's nose,
throat, trach site and lungs. This was all followup from his trach surgery. Last
night at midnight I had to stop Colby's feeding and start fluids (Pedialyte.)
Then I got up at 2:15AM to start getting ready. That's right, 2-freakin-15 in
the freakin flippin morning! Started getting Colby up at 3:00, bless his heart.
Dad, nurse Alli, Colby and I were loaded up and heading for Cincy at 4:30. They
wanted us there at 6:15. Everything went smoothly. His procedure was scheduled
for 8:25 and they didn't come get him until 9:00, but it sure as heck wasn't
our fault. We did what was asked of us, getting there at 6-freakin-15 in the
freakin flippin morning. ENT said his trach site looked awesome, no signs of
infection or inflammation. Pulmonary said for the most part things looked good,
then showed me the pics from his broncoscopy of the lungs. Man, those
right-side airways are messed up! Very compressed. Very jacked up. The
pulmonologist said it was a miracle with Colby's compressed airways that he has
remained as healthy as he has. He said whatever we've been doing for airway
clearance, which is saline nebs, IPV and CoughAssist 3x daily, is working. Colby
did great. He is such a trooper. He never whined or griped about anything the
whole day. He's the bravest, strongest, sweetest, most wonderful son I could have
ever gotten. I love him and am so, so, so, so, so proud of him and blessed to
be his mama.
Needless to say we're all tired. Colby and I will both be in
bed by 9:30. Maybe 9:00 if I get in gear! Tomorrow will be a catch-up day. Go
pick up Colby's briefs. Go to the grocery. Give Colby a bath. His hair is
starting to smell funky! Unpack all the crap from today, etc. But I'll worry
about that in the morning. Right now all I want to think about is sleep. Deep,
glorious, much-needed sleep. Nitey-nite, all.
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