Update

Monday I have to go to the office so Cailyn and Curt will be on their own to get up, get fed, get meds and get to PT. Sarah will come in the afternoon and watch Cailyn and play with her. We've been showing her Cailyn's PT and massage.

Cailyn's been doing well. She's had a few days with no seizures which has been nice.
Here's a break down.
10-29 none
10-30 1
10-31 2
11-1 3
11-2 none
11-3 Monday night she had them for about an hour but that's the most its been in a few weeks. She might have had between 6 and 8 in that hour. I figured she is probably getting the cold Curt brought home and gave me. They say when she's sick it will change her body chemistry and could make more seizures. So far no stuffy nose so maybe Monday was just a fluke.
11-4 to 11-7 none
11-8 2
11-9 none

She's up to 1 lamictal everyday and going down to 4 ml of topamax 2x a day. Then she's at 2ml of keppra 2x a day and Zantax 1/4tsp 2x a day.

She's had a few instances of puking and we aren't really sure what its from. One day she had avocados but she had eaten them before so I think maybe they just didn't sit right. Curt and I both had colds so we thought she was maybe going to get it but luckily it seems like it skipped her. This is a total blessing because after finishing with the steroids her immune system was lowered.

She actually had an awesome day on Wednesday the 5th. She was super active and at swim class she was even kicking and splashing for the entire class. This was a first, usually she just floats and hangs out in the pool.

She's had 3 cranio sacral therapy sessions so far and she gets better after each one. She'll go again on Tuesday and then I think we'll hold off and wait at least a week or two in between. This way we'll see how she's doing and how much insurance is going to reimburse for the treatments.

Wednesday we go for another round of blookwork for the metabolic studies. After the results come in the neurologist will tell us what's next and what the geneticist is thinking is going on.

This Thursday we also meet with a new pediatrician. She's been recommended by Cailyn's OT, PT and another mother at PT. Dr. McDonald specializes in special needs kids. Her current pediatrician just isn't cutting it and we need someone who is more involved. So if it works out with her I'll set up an appointment for the end of the month so Cailyn can get back on track with her vaccines and the flu shot.