Thursday, January 22, 2009

It seems like I keep posting the same story :(

Well Kiera is still continuing to have the prolonged seizures, Tuesday night at midnight while she was sleeping she had a 16 minute GTC, then about 2 hours later she had a 10 minute cluster seizure.
Nothing has really changed as far as medications or her health so there seems to be no cause for the increase.
Kiera, although the seizures have increased, is still doing well, so that is something that we can hang our hat on.

Last night we watched American Idol (AI) and she was smiling a bit while vocalizing some, that was good to see.

Kiera and all the children that have CDKL5 are tough little cookies, they go through so much but keep bouncing back. Sometimes I think it's us parents that have a harder time with things as far as our children go.

Friday, January 16, 2009

Another long seizure

I am feeling kind of sad today, Kiera had another long seizure on Wednesday, it was a 19 minute seizure.
She is not ill or anything like that, and even if she was sick, she would most likely not have any seizure activity.
Because of that, there is nothing to blame the seizure on. She is on three seizure medications now, and all are at their max doses. What do we have to loose if she comes off some of the medication? on the other hand, what would we have to gain if she was to come off some of them?