Good Monday morning, blog readers! Time
to chug down some coffee and get this week started, don't you think?
Here's the latest with us.
There has been a change in plans for
today. Colby's nurse called in sick. I talked to him and he sounded
horrible. So yes, I think he is legitimately sick. He won't be coming
in today, which means no school for Colby. This also means I won't
have a nurse all day, but that's okay. I'm getting rather used to not
having nursing. Been working with the agency to get empty shifts
filled, but it's not as easy as it sounds. We haven't had Colby's
nursing schedule filled in months. Then we had one nurse quit and
another is having surgery soon. Uh, yeah, we need to get some more
nursing peeps in here to cover these empty shifts, like ASAP pronto.
Having nursing help in our home is not the magic answer some people
think it is. It comes with its own issues and problems, trust me.
Makes me very thankful for the great nurses we do have. This is the
first sick day Nurse Dave has taken since he started working for
Colby in July. Hope he gets better and can make it in tomorrow.
Took Colby to Cincinnati Friday for a
follow-up appointment with the spine surgeon. Colby got the “all
clear.” Yay! They took x-rays and the surgeon looked at Colby's
back/incision. He said everything is right on track, looks great, and
gave Colby the okay to resume activities to what we were doing
pre-surgery. Surgeon said the only thing Colby wasn't allowed to do
is sky diving and bungee jumping. Haha, I think we can handle those
restrictions. So I started giving Colby extra PT on his hips and wow,
he is stiff! It's going to take some work to get him back to where he
was. Hoping it's not too late and that Colby's hips haven't
contractured. That would suck big time. We got stuck in traffic on
the way home. Uggggg, that's so frustrating. But I tried to keep in
mind we weren't the ones in the accident. We didn't get hurt or the
van didn't get damaged, and that's what really mattered. But it was
still frustrating, ha!
Colby's g-tube has been leaking lately
(insert big sigh.) This is new. In 12 years, Colby has never had an
issue with anything digestion-related. This is saying something
because many SMA kiddos have motility issues. My guess is the size of
his Mic-Key button needs to be changed. That's the way he eats. You
stick an extension and syringe in the Mic-Key button and pour in his
food, straight to his belly. Colby eats nothing by mouth. He only
gets to taste foods occasionally. So if it's leaking and he isn't
getting all the nutrition he needs, that's a big deal. Will start
making some calls on this issue today. Can't have that stinky food
leaking out, that's just disgusting.
Colby and I have finished reading the
first Harry Potter book. I was so excited to watch the movie with
him. Well, he hated it. Within half an hour, he was crying. When
Harry is on platform 9-3/4 getting ready to go to Hogwarts, the tears
began. Oh sweet boy. Sometimes I just don't know about that kid. I
knew he'd love it! Wrong, wrong, wrong. Maybe we'll try again. We
watched it Friday after being gone to Cincy all day. We were worn
out, so maybe Colby just needed his familiar Spongebob and wasn't in
the mood to try anything new. The nurse and I gave Colby a hair cut
and bath last night. Not exactly an easy task, but it definitely
needed to be done.
As for me, I have much to do this week.
Many, many phone calls to make, not just Mic-key button issues.
Booooo. I have some paperwork/mail to go through. Getting ready to
start a load of laundry and get boy up for the day. I'm also working
extra days this week, so I'll need to get these phone calls and other
bullcrap stuff done before Wednesday. I've been trying to eat
healthier/lose weight and you know what, it ain't easy! Incredibly
frustrating as a matter of fact. There's measuring portions, chopping
veggies, reading labels when grocery shopping, finding time to
exercise. It's like having a 3rd job around here. 1st
job-full time mommy to Colby, 2nd job-pre pack at the
hospital, 3rd job-start taking better care of myself. So
time consuming and not easy giving in to stress eating and cravings,
but hoping it'll be worth it. I've lost 4 pounds in 4 weeks, which is
right on track for what “they” say is healthy weight loss. Hoping
I can keep it up and take the time to take care of myself. Not easy.
Not easy at all, but I must do it to be the best mama I can be to
Colby. And I'm not going to lie, I want to get back in my skinny
jeans!
Wrapping this up now. I hear Colby back
there, awake and obviously wanting some attention. Will blog more in
a few days when I have time and/or there is something to blog about
for all you good peeps to read! Bye for now.
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