Looks as if I've been a little lacking
in the blogging department. Guess I'll remedy that now. Get ready for
an earth-shattering blog update.
Just kidding. Not much around here to
report really. Colby is doing his thing - school 4 days a week,
swimming once a week and visits with his high school friends 2 days a
week. Little stinker stays pretty busy. I was looking at my calendar
for the rest of the year and realized there were no upcoming
appointments for Colby at Cincinnati Children's. I knew that couldn't
be right! So I called the Concierge Department there and they helped
me schedule follow-up appointments. Scheduled 8 appointments as a
matter of fact: orthopaedics, ENT, pulmonary, cardiology, neurology,
wound care, endocrinology and ophthalmology. These are spread out in
June, July and October. Just thankful we aren't scheduling pre-op and
surgery dates. This time last year we were starting to prepare for
Colby's spinal fusion surgery. So very thankful we have no Colby
surgery to deal with, prepare for and schedule. Totally nerve
wracking.
I've been watching a lot of basketball
lately. A LOT of basketball. I do love the madness of March. Tried to
get Colby to watch some games with me. Yeah, that went over like a
lead balloon. He did, however, watch the last 20 minutes of Hoosiers
with me the other day. I'll take it. Close enough to watching
basketball with Mama.
Proud Mama moment – my friend Jimmy
came over for supper the other night. Colby was sitting up in his
wheelchair and his eye gaze was hooked up. I told Colby he needed to
tell Jimmy hi, and he did! Not only that, after he said hi he said,
“My name is Colby” and then hit the button to say, “this is my
talker. I use it to communicate by using my eyes.” It was
priceless. Colby was actually using his eye gaze to say something
appropriate. I'm still smiling about it. Then yesterday my dad came
over and Colby said on eye gaze, “Let's play Uno.” So of course
Grandpa agreed to play. And Grandpa showed no mercy. Beat Colby 2 out
of 3 games. Bet you it might be a while before Colby asks Grandpa to
play Uno again!
I won't bore you with the details, but
last week was very difficult trying to get Colby's supplies ordered
and other various phone calls. To the point I was in tears by the end
of the day on Wednesday. Usually I refuse to let these assholes get
to me, but I had just had enough. Enough with the errors. Enough with
the delays. Enough with somebody else needing something else from me.
Thank God nursing is going okay right now or seriously, I don't think
I could handle it. Something has to give. It has to get
better/easier, something. And soon.
Not much going on with the house. The
contractor was out of town last week. This week supposed to meet with
an interior designer to see his ideas for a floor plan. I, and
several others, worked our fannies off on a grant application.
Applied for a grant to help with handicap accessible home
modifications, specifically to reinforce the ceiling, purchase and
install an overhead motorized lift system for Colby to be transferred
from his bed to his wheelchair or shower chair easily. It's due April
1st but I delivered that sucker last Friday. I was so glad
to get it done and out of here. We won't hear anything until
mid-June. That will drive me crazy cuckoo, but not much I can do
about it I suppose. Praying to the grant gods we get this grant. A
ceiling lift system would make all of our lives easier and would make
transferring Colby much safer.
Okay, I guess that's it. My eyeballs
are sticking together from my dry contacts and I keep making typos.
Time to watch the rest of Castle and go to bed. More soon. Promise it
won't be so long until my next blog.
