Day four of the familial hospital stay is well underway.  Marissa's room took the atmosphere of a refugee camp in previous stays, but time and wisdom has prevented the encroaching stuffpile this time- we're traveling light and lean.  This only benefits us in the going home phase of the stay, which we aren't quite sure of yet.

Marissa's MRI yesterday was mostly normal.  Apparently, reading an MRI is much like reading the age of a tree by looking at the growth rings.  A neurologist can with a fairly high degree of certainty figure out the age of the child by looking at the progression of brain myelinization.  If our neurologist looked at Marissa's MRI without knowing anything else about her, he'd assume she's 13 months old.  She's 19 months old, almost to the day.  This disparity in itself isn't bad, nor is it good.  File it under better than it could have been, worse than we had hoped.

The EEG happened about a half an hour late, but as far as hospital schedules go, that's basically earlier than predicted.  The better than it could have been, worse than we had hoped box is pretty full these days.  I'm nosy, so when the EEG went live I was right there checking out the LCD.  While I don't have a photographic memory nor am I a trained technician, the EEG pattern was clearly worse than the one I had snooped out a few months ago.  Our suspicion of enhanced seizure activity is correct- in fact, she's basically seizing all the time, 24/7, with no focus, but slightly higher activity on the right hemisphere, non-localized.

Our EEG technician has some sort of review board coming up where he has to present three cases.  He was pretty excited about ours initially, and told us proudly that he was going to present Marissa.  As the hour progressed, he declared that Marissa's case was too complicated for his board.  Marissa stumps medical science again.

We just started Lamictal yesterday.  We're doubling down today.  Round two of steroids begins after a long gap- over a year.  We start with a pretty high dose of orapred.  Please join me in welcoming back Cranky Marissa!  In all seriousness, the orapred wasn't as bad as the ACTH, but who knows where we're going if the orapred doesn't do anything.  Got to love medicines who's mechanism of function isn't clearly understood.  

When do we go home?  We need better seizure control, as we have none right now.  The earliest departure from the hospital is tomorrow.  The latest?  Time will tell.

I’m tired of having time tell me things.