Tuesday, November 9, 2010
It's been a long time since I've been on here. I've
been busy and lazy all at the same time. Here are the highlights
of the past week.
Grandma was here for Halloween weekend. She got to
watch Jack while John and I got to spend some time together.
Jack's nurse came last Wednesday. As I got ready
she got him dressed and kept him company. She also got all of his meals
and medications ready before I even thought about it. He had 4 other
appointments that day. PT, OT, Speech and case management for ECI.
I've decided to cut back on therapies for a while. I do most of the
therapy on him and Jennifer will be able to help with it now.
Friday we went to the mall and he was so good. He got
mad once but he just wanted to be held. I think he was taking it all
in. The last picture was in a fitting room. He kept moving his head
to look in the mirror. A little later he was picking his head up
off of his head rest. A small accomplishment!!!
Monday was his 18 month check up. His pediatrician has
been following him since the NICU so I don't have to go through his
history. He is going to put him on Melatonin (for sleep) and Rubinol
(for drooling). Of course I can't just pick those up. We have to
get approval from the Keto team in Houston. I spoke to Dr. Schultz today
and she said that all of the medications have carbohydrate in them but they
were OK for him to take. Hopefully, we will be able to get those
soon.
I have a call in for his Neurologists in
San Antonio about starting him on Baclofen (for high
tone). He mentioned it last time we were in for Botox but
didn't want to start it due to him just starting the diet. I
am cautious about starting more medications but I feel like all of these will
make his life a little better. Today the nurse case manager came over so I could sign the paperwork for Jack to start his CCP hours with Medicaid. Jennifer starts full time tomorrow!!
He lost a little weight since November 12th. He was
28.8 lbs (with clothes on) and now is 26.11 lbs (without clothes). Emily
(keto dietitian) said that he is now in the 50% so we will watch him closely to
make sure he doesn't drop any more. If he does then she will increase the
amount of food that he gets.
Feeding him has been about the same. He takes it down
once I get it past his teeth. Dr. Easter said that the Baclofen will help
with his tight jaws. Right now we are working on green beans with butter
and cream and carrots with butter and cream. He seems to like both.
He makes a face with just about every bite but continues to open his mouth (a
little) and swallows. He still fights a little and knows how to
let it fall out of his mouth. He will turn his head to the side and the
food just slides out. I have to be prepared at all times.
His seizures have decreased a little with the ratio
increase. He's now at 4.25:1. He was averaging 15 a day and now
it's down to 12. There was one day that he only had 6!! Another
small accomplishment!
These are just some cute pictures that I took the past
week.
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| Just a cute face. |
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| This is Rusty "Checking on the Baby" |
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| He was actually looking in the mirror! |
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