Hey, guess what! You're going to be
shocked to read this, but we're short on nursing. Yeah, can you even
believe it?! Colby has a nurse who works the weekend evenings, Sat
and Sun from 4p-12a. She needs surgery and will be out for the next
4-6 weeks. I'm not going to even attempt to get her shifts filled.
We're darn lucky to have a weekend nurse, and I'm pretty sure the
nursing agency will have trouble filling the shifts. Screw it. I have
plans to go to a Halloween party on the 28th. One of Colby's other
nurses said she would work that night so I can go out. Other than
that, Colby and I will just spend some QT together. As one of my
friends said upon finding out we'll have another nurse out, it's one
step forward and five steps back with the nursing situation. When
nurses call off it doesn't even phase me anymore. I'm actually more
shocked when they all manage to show up for their shifts in a week. I
have no control over it, so I better learn how to deal with it.
Colby started attending school on
October 2nd. That means we're both getting up earlier, and
the nurse has to be here earlier in the mornings. We're slowly
adapting to the new schedule. And I've decided to send Colby to
school all 5 days a week instead of 4. I really like his teacher this
year. She has already learned how to navigate his eyegaze. I think
she sees potential in Colby and is also willing to push him when it
comes to his extreme stubbornness. There's no way I'm taking Colby's
swimming away from him, so we'll be doing that one evening after
school. Hoping it doesn't wear Colby, and me, out too much. We'll see
how it goes.
Spinraza injection #3 is done! Colby
did as well this time as he did with the first two. One more loading
dose on Nov 15th, then he won't have another dose until
120 days, which is March 2018. Our appointment was at 6AM. Damn,
that's early. I gave it some thought and decided doing an up and back
trip would probably be easier than packing, loading, unpacking,
unloading, repacking and reloading all of Colby's stuff. So we left
at 4-freaking-AM last Thursday. Everything went smoothly. Colby and I
both seemed much more at ease this time around. I don't take chances
with him developing a lumbar puncture migraine, so I make him lie
flat for 48 hours. He was not digging it! I could tell he was totally
bored. Sorry kid, Mama's rules. It's a small price to pay to avoid
complications from getting the injection.
We're getting excited for Halloween.
I've been doing some decorating here and there as I've had time. I've
decided my decorations are all too cutsie. Time to step it up and get
some bigger, scarier stuff. Also need to decorate outside more. Okay,
I don't know if I NEED to decorate more outside – I just really
want to do it. If I had the time and money I'd turn this darling
little bungalow into a creepy, scary, awesomely decorated house.
Wonder if I could find a good price on a coffin somewhere...
So that's a little update. I'm working
some extra hours this week so I figured I'd better blog while I had a
little time to do so. You know, gotta make hay while the sun shines.
More soon, as time and energy level allows.
