I lost it and found it again.
I haven't written in a while... well, because things are actually going better! It's hard to admit... as mothers of medically fragile children, when our children are doing better:
- We are conditioned for disappointment. As soon as I embrace or celebrate a good streak... it usually ends abruptly in a larger scarier seizure or longer span of unwelcome symptoms or activity.
- We don't want to rub things in. There are other Moms still struggling with their children and we feel bad.
- We convince ourselves it isn't real. We have been used to things being hard for so long that we are in disbelief.
- Observations remain unproven. Why is she better? Too hard to tell...
Isabelle went 6 DAYS without a seizure.
I'm celebrating... (reluctantly)
The thing is, we didn't do anything drastically different the past week... the reason for this hiatus is unclear. Izabelle was sick with a respiratory infection and had high fevers for three days this week. Fevers usually spur increased seizures for Izabelle and makes this even HARDER to tease out.
- Could it be the high fever detoxing her body?
- Is it all the Ibuprofen and Tylenol we gave her?
- Is it the last two supplements finally working? Its been six weeks.
- It can't be that we lowered clonazapam 6 weeks ago and it's finally showing... could it?
- We added a new ADHD/Anxiety med on Tuesday... how could that be it? She still didn't seize for days before the addition!
- Is she reaching puberty and starting to show signs of growing out of her seizures? (To believe this... is truly a risk to my sanity as a mother. I'd rather expect the worst and have it not come then expect good and be devastated.)
"Why tease things out?" To fucking find out what's working and duplicate it! It's a constant battle!!! Time to watch and wait. We are back to square one. Seizure this morning. The real indicator will be observing her over the next few days to see if the decrease in seizures is a reality.
