Thursday, December 19, 2013

Midwinter musings

I haven't shared any tales of woe because inclement weather has shut down schools and nearly everything else here for days. Even now that the city is functioning normally again, I'm keeping C. home because she has no hydrotherapy today and because the paths are still not entirely cleared of snow.

This has allowed us plenty of time for walking, Hart Walker practice and tablet work (still no great strides).  And, after slipping on ice and injuring my back slightly, I welcome the reprieve from pushing C. up the hills to school.

Even the visiting nurses are vanquished by snow, so today was C.'s first opportunity for a blood test. We'll soon find out what the Valproic Acid levels are and whether the neurologist recommends a further rise in dosage. Toward that end I'll need to report to her what C.'s seizure tally has been. Not easy without a log but here are my impressions.

She has often had only two seizures a day, which is down from 3-4. But there were also isolated days when she had up to 5. We certainly haven't achieved the full control that we'd hoped for.

I was glad to read today that the maximum recommended dose is 60mg/kg/day. Since C. weighs about 30 kg., this enables us to still raise C.'s dosage from the current 700 mg twice/day. Especially since, thankfully, I still haven't noticed any negative side effects.

I sometimes feel as though half my life is spent searching the house for lost items. I'm currently on the prowl for a book (borrowed, of course, just to complicate matters) and a scarf (a gift from my children, also to complicate). The silver lining is that while I rarely find what I'm after, other items of interest tend to turn up.

Here, for instance, is a painful photo (on the right) that surfaced. C., at about one year old, was still  pegged "developmentally delayed" and, looked beautifully near-normal. Her MMR vaccine and consequent descent to profound impairment were yet to strike.

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