Jun. 4th, 2011

michaeldthomas: (Caitlin 10)
It's time for a Caitlin update. Things are more or less stable. She's still a happy little lady.

Good Things:

1- Caitlin has only a 1/2 day of school on Monday. She survived 2nd Grade. :-) Summer school starts the next week.

2- She still had a monthly seizure two weeks ago, but it only lasted a minute. Hopefully, this means the new Sabril med levels are working.

3- Caitlin was approved again for the state supplemental insurance program. Hooray for us staying Lower Middle Class!

4- She will have a back brace in a week. She totally aced the fitting.

5- All of the changes for state employees didn't affect our health insurance program.

6- She has no pain in her hips. In that way, the surgery worked.

Bad Things:

1- Her knee still hurts from her holding it funny during the recovery from the hip surgery. It also swelled up last week due to intense PT. :(

2- We found out yesterday that Caitlin will have a new Special Ed teacher next fall. This was a surprise. Her current teacher is one of the only people in the district who knows how to program and incorporate Caitlin's Dynavox communication device. I guess we'll see how the district plans on handling this.

3- After 7 years, we're losing Caitlin's Case Manager at our primary health insurance company. We'll miss her. It's scary since she was a pretty good advocate for us in the system.

4- We have to change Caitlin's feeding tube button tomorrow. Not tragic, but always unpleasant.

5- I need to start the process of getting her a new wheelchair.

So overall, things could be much worse. Caitlin still has a wonderful quality of life for a girl with Aicardi syndrome.

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michaeldthomas

August 2011

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