Marissa’s sleep oddness is well documented here- the shift to (or from, I can never remember) just made that worse.  In the last few days, she’s normalized back to 11PM or so as bedtime which has taken an enormous load off of us parentally.

We had a different alarm this morning than the normal electronic wailing- Marissa started seizing at 4:04.  We expected 12 or 13 spasms over 5 minutes, then we’d be done and could go back to sleep for about 45 minutes until it was time to actually get up for work related preps. 

What we got was 48 spasms over 12 minutes.  Not our personal worst, but second in line.  Sleep was not coming after that.  I got up, showered, and in that time, Marissa fell asleep again, but the wife and I sat there in dismay discussing how bad it was.  The day has clawed on, the sun has disappeared behind the rainclouds and we’ve had one more cluster, very mild, but an astounding number of single drops.  Something’s changed, and not for the better.  I read on one of the many online resources available for epilepsy that seizures find a way around medications, and I wonder if that’s where we are.  I’ve appreciated the Keppra for what it is and what it is not.  Keppra is a fairly recently FDA approved effective anticonvulsant without some of the more severe side effects of other older drugs- it’s been Marissa’s lifeline so far.  I’m reluctant to give it up.

So here we are, it’s almost 3pm, and we’re waiting on a callback which is sure to come while we’re out of the house in 45 minutes or so for a different appointment.  Somewhere, on an arcane control panel on some misty distant kingdom at the peak of a mountain guarded by ravenous beasts of all kinds there’s a switch with our name on it.  Gilded letters proclaim it to be the drama switch, swirling mystic letters denote it as ours.  If anybody runs into this switch, please turn it to “off” and destroy it when done, please.  Thanks in advance.

Up tomorrow- Marissa’s assistive chair and a therapy report from yesterday