Well, the start to 2017 was totally
sucky. But we are doing much better now. Thanks to everyone who
called, texted or asked on Facebook how Colby was doing. There's no
doubt in my mind we are surrounded by so many people who love and
care about us! Took Colby to the pediatrician here in town Tuesday. I
was leery because his regular doc was out of the office, so we had to
see just some other doc in the practice. I really liked him! Turns
out Colby had an ear infection. Not really sure how. We didn't go
swimming last week because I was sick. Didn't go swimming this week
because Colby was sick. But anyways, he's on Omnicef for 10 days. I
think we caught it just in time before it started moving down into
his trach and lungs. So I've been getting up through the night to do
a respiratory treatment for Colby. Nebulizer, IPV, CoughAssist, the
whole shpeel. For 2 nights he was up with a high heart rate and low
oxygen. For the last 3 nights we've been doing extra treatments. How
much sleep are we not getting this week?! But if it helps Colby get
better, that's fine. I'll do the same tonight, then reevaluate
tomorrow based on how his numbers hold up, the color and amount of
his secretions, etc.
I've made the decision to put Colby on
home hospital for school during the winter. I'm one of the few SMA
parents I know of who sends their kid to school during the cold,
germ-infested winter months. Colby has never been sick and in the
hospital once during the winter. So weird. He's had major illnesses
in September, July and March, but not during the winter months. And
there's this little voice telling me, hey, don't push his luck. We
could use the rest, that's for sure. There are lots of things we can
do with him at home that are educational, if we choose. Plus he'll
have a teacher come out for a couple hours each week to bring him his
school papers and work on them with him. Pretty sure I'll never
regret the decision to spend more time with my kiddo. I've already
told him swimming will be decided on a week-to-week basis, based on
weather, how he's feeling, etc. He probably didn't like that. We've
also always taken him to the pool in the winter. Yes, I know, I'm one
cra-cra mama. Never claimed not to be!
We are still without a bunny around
here, but it's not my fault, I'm trying! I e-mailed the lady at the
rabbit house. She e-mailed back the next day saying I needed to fill
out the online application, which I did immediately. Now I haven't
heard from her in almost 2 weeks. I called her once, left a voice
mail, and yesterday sent her another e-mail. Uh, hello, we're in need
of a bunny to put in this ginormous cage set up in the living room! I
think it's supposed to be warmer next week. I guess if she doesn't
call back, we'll run Colby up to the local pet store to pick out a
rabbit.
I have some happy news to share. Last
year my endocrinologist found a cyst in the bed where my thyroid used
to be. Okay, that's obviously not the good news lol. She sent me to a
neuroradiologist. He thought the cyst was nothing to worry about, but
wanted to do follow-up a year later. Went to the neuroradiologist
yesterday and now he's almost totally convinced the cyst is only a
cyst and not a recurrence of cancer. He's calling it a “post
surgical cyst thingy,” very scientific term isn't it. The mass/cyst
doesn't look suspicious and has shrunk in size instead of grown. So
zip-id-eee-do-dah, I'm still cancer free. I could have reached up and
kissed him right on the mouth, but managed to hold my composure
instead. He wants to look at it again in a year just to be on the
safe side.
But the really, really, big, huge
exciting news is that with any luck, and work and coordination with
Cincinnati Childrens, the drug company, Colby's insurance company,
etc, and with the pharmacy gods smiling down on us, Colby will be
able to receive the recently approved drug to treat SMA. This is such
a huge deal people! After 14 years, there is FINALLY some hope that
the progression of his SMA will stop worsening, and maybe, just
maybe, he will gain back some strength and mobility that he has lost
over the years. The wheels are in motion. Best case scenario, 2-3
months. Regardless, Colby will be receiving a drug to fight his SMA
in the near future. I'm flabbergasted this has come to fruition. I
honestly never thought a cure or treatment would be available during
Colby's lifetime. Never been so glad to be wrong about something in
my whole life! I'll keep everyone updated, of course. Right now I've
done what I can do. Signed a consent form and signed a start form.
Next Colby's neurologist fills out the rest of the start form,
submits it to the drug company. Then Cincinnati has logistics to
figure out like which department is administering the drug, do they
need to hire more people, stuff like that. Amazing. Simply freaking
amazing.
Time to tuck in Colby and go to bed so
we can get up at 2AM for a respiratory treatment. Oh goody. G'nite
all.
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