Happy New Year!
I hope this new year brings about
all wonderful news and progress.
We still have not received the
results from Cameron’s blood work. What
could possibly be taking so long. I was
told 3-4 weeks. It’s been 5 and a half
weeks. Are they just not going to tell
me until our follow up appointment on 1/11?
Is it possible that it’s not Rett and they are testing for other things
now?
Cameron had her swallow test done
on 12/23. As we suspected, she is not
swallowing her food. She takes 3 bites
and swallows. Things like waffles,
oatmeal, pasta, etc. are just sliding down her throat and probably breaking
down easily. Harder foods like meats and
cheese are not breaking down. When they
watched her drink her juice, they noticed she has reflux. So, with a combination of the reflux and hard
foods, she sometimes throws it all up.
We immediately changed her
diet. We took away all hard foods and
acidic foods and drinks. It has made a
huge difference. At least, we are
attributing it to the change in diet. In
10 days, she has not woken up once in the middle of the night and has even
slept 1-1.5 hours longer in the morning!!!
I hope this continues. We need to
go to a nutritionist and GI specialist to get more information though. In the grand scheme of what is going on, the
not chewing and reflux is a very minor issue.
Billy took Cameron to get her
eyes checked on 12/30 at the Wheaton Eye Clinic. He was very impressed with how thorough they
were. They spent an hour with her. Her eyes have gotten stronger, however she is
farsighted. This news was definitely not
surprising to us, as neither of us can see.
So, we get to go pick out some glasses this week. Hopefully the glasses will help her. We think she’s going to look so cute with
glasses!
On New Year’s Eve, during the
last half hours of 2010, I could not stop thinking that this is the last year
(time) that we will have with our angel without a diagnosis.
I hope I will have the strength
to be the mom that Cameron needs me to be.
I hope she will never suffer or realize that she is different. I was told that parents of kids with special
needs hurt more than the kids b/c it’s the parents who know they are different. I just wish Cameron would have all the same
opportunities as every other child.
How did we get here?
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