Lulled into a False Sense of Security…

Day 2…


Well… I have to admit… I thought that we had gotten the mix “right” and that we had control over the seizures.  It had been 68 days.  Until Wednesday.  Until I got the phone call at work that Amandya is seizing.  Crap.

The tonic-clonic part was probably, from the description, the worst she’s had yet.  Usually it is thrashing and her jaws clench and unclench.  This time, it was curled into a ball and jaws clenched tightly. The complex partial seems to not have been AS severe, and the aftermath was less severe than normal, too.  She didn’t throw up, the migraine didn’t get quite as bad and the light sensitivity wasn’t as severe (although, she did ask to have a blanket put over the window) and she didn’t sleep more than half an hour or so after the seizure….

On the up side… Theresa, the nurse for the neurologist, was fabulous with me and we didn’t have to up the overall dose (just add in an extra on Wednesday to make sure if anything was weirdly up that we got extra meds in to stave it off).

Maybe it was a breakthrough seizure.  We might not actually have the setback that we assumed it was.

I was impressed with how she reacted to this one… she didn’t get angry… she didn’t freak out… she just… went back to reading.  My kid who doesn’t like to read has suddenly decided that she has found a book that she likes and she is devouring it.  She showed me last night that she was “only” on page 100 something…. and I thought back to the Pre-AP classes of last year and reminded her that she didn’t really read 100 pages and get anything out of it all year last year.

She has grown so much the last few months… it has been wonderful to watch.

She has made some hard decisions the last week or so.  Ones that she has spent an inordinate amount of time weighing and considering and thinking about… ones that she arrived at the conclusions all on her own.  I respect her decisions.  I respect what she has done and decided, not because the decisions were right or wrong, but because she weighed all of the pros and cons and made her own decisions.. not angry… not frustrated… just decisions.

Watching her… I don’t think it was actually worth developing epilepsy to grow, but the growth has done her a lot of good.

Now… to try to get back to 68 more days…


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