Cleveland Clinic Day 6

Saturday and we’re still here.

Lisa’s been stepped down off of all of her medications. Talking with the doctors and the ward nurses, it isn’t uncommon for this to happen. A child is brought to the ward, hooked up to all of the equipment and … the waiting begins. She’s had a couple of dizzy spells, some hand trembling, and some stomach activity reminscent of the very early seizures but nothing useful that could be captured on the EEG.

The most nerve-wracking thing about this is that she has a tendency to go into status very quickly so we were hoping to capture the information we needed while she still had some drugs in her system. Lowering her doses feels a little like playing Russian Roulette.

The other problem is that sitting around with no symptoms gets your hopes up. “Wow, maybe she’s been miraculously cured while we weren’t looking.” But this doesn’t really happen, not after this many years.

So, the waiting continues. Lisa’s now been through a Mork and Mindy marathon, a Bob Newhart Show marathon, is caught up on all of her homework, and has watched nearly all of the DVDs she brought, including all 3 Spiderman movies. We should have packed more movies. It’s like the Gilligan’s Island folks – they thought they were going on a 3 hour tour…

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