Colby had another snow day yesterday. They've had to adjust
the school calendar and now Colby's last day of school is June 9, providing no
more snow days I guess. I've been toying with the idea of not sending him back
after Memorial Day. We need to keep him as healthy as possible before surgery
(end of June.) But then again, if he can go to school and do okay during this
frigid winter, he should be more than fine come June. Decisions, decisions.
And speaking of decisions. Colby's class had a field trip to
the circus last Friday, and I decided to let him go. I didn't want him going in
and out of cold too many times, so I said I would take Colby and the nurse to
the circus and drop them off at the door. It was a madhouse. School buses
everywhere, little kids everywhere. Got yelled at by a cop because apparently I
was trying to drop Colby off at a spot that was NOT a drop off spot. Sorry,
dude, nobody told me, I'm just trying to get my trach and wheelchair dependent
child into the frickin-frackin circus. Calm down. As soon as I pulled away, I
felt panic and regret. What had I done? It was a BAD idea sending Colby with
all those other kids i.e. germs around. Then I text the nurse, asked if
everything was okay. She said they had front row center seats, and Colby was
loving it. He was paying attention and his eyes were huge, taking in
everything. That made me feel a little better. I guess we all have those
parenting moments when we're like, WTH did I just do to my kid? But Colby
handled it like a champ, as always.
So if you pay any attention to this blog, you know we've had
ongoing power struggles with Colby and he does/doesn't do on eye gaze. He was
asked at school to spell the letters in his name. Not rocket science. Well,
Colby simply refused to do it, so it then became homework. I then decided this
is something he's going to work on every day. Of course it has very little to
do with whether Colby knows a C from an O or an A from a Z. It's about him
knowing we (teachers, nurses, therapists, grandparents and I) have expectations
for him, and him doing what is asked. There have been some looooong
name-spelling sessions, let me tell you. However, I'm very happy to report
Colby has made tremendous progress in reaching this goal. The other day he even
spelled C-O-L- in a row. Very impressive. We all know he can do it, and it's so
wonderful to see him using that big brain of his and working towards doing something
that is asked of him. I think that shows much maturity on his part. Perhaps
it's time to move on to the next goal? Math. Dear Lord, Pope Francis and the
Seven Dwarfs, pray for us because I believe Colby hates math more than he hates
spelling! Everyone involved better stock up on the wine and chocolate.
We had a heck of a busy day today. Colby had school. Then
swimming. Then the nurse and I gave him a haircut and a bath. Plus now somehow
we're back to changing his trach on Tuesdays, so it was trach change day. Not
to mention Colby's little butt was up before 5AM this morning. Why, you may
ask? Heck if I know. I checked on him and he seemed to be ok, so I don't know
if he had a dream, or an ache, or an itch. Not sure. Another reason eye gaze is
so important to learn, so he can tell us these things!
I'm rather tired myself, especially since I was up before
5AM also. Thanks, Colby, really appreciate that. I'm just killing some time
until the laundry is done. We have no clean slobber rags (washcloths) for
Colby, so as soon as the load is finished, I'll pitch them in the dryer and go
to bed. We can really live it up on a Tuesday night, can't we? Try not to be
too jealous.
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