Day 8

Still no seizures.

Now, under normal circumstances, I would start thinking, "she's probably going to have a seizure soon."  I guess the regular stresses of life, the regular triggers, the regular predictors and signs just don't apply in the hospital.  Different setting.  Different stresses.  Different everything.

Initially, we told her we would come home on September 8.  Well, yesterday was September 8.  So, all evening, she was wondering why we weren't going home.  She doesn't like it when her schedule changes.  She especially doesn't like it when she plans on something and it doesn't happen.  Now, I'm telling her we're going home on Saturday, and I'm hoping that we won't stay here that long.  However, it will be easier to go home early than it would to tell her we had to extend it again.  Poor darling!

I'm starting to think that all of our attempts to stress her out have done nothing but stressed her out.  So, I think I'll let her relax today.  She's exhausted.  Right now, she's pulled her blanket up over her face, trying to go back to sleep.

On the plus side, I talked to the docs this morning, and they told me that the test definitely has not been a waste.  They have seen a lot of epileptic activity that hasn't translated into seizures that we can observe.  Which means that there is always something going on in her brain.  It makes me wonder how many of her "autistic moments" are really more related to epilepsy than they are to autism.  It raises lots of questions about epilepsy and autism and the brain and how it all fits together.  For all I know, this week's worth of data will help us understand Jessi even more.  Perhaps it will guide the doctors to a medication that will actually work for her.  Perhaps they will be able to alter her treatment entirely, and they will be able to find something that they never even thought of trying.

One of the questions they were facing with this test was the possibility of her epilepsy being operable.  They said that in order for it to be operable, all of the seizure activity would have to originate on the same side of the brain.  One of the docs told me that there were some indications that both sides of the brain were involved in the seizures.  They haven't ruled out an operation at this point--they would like to see an actual seizure before they can be certain of anything--but it's looking like an operation might not be the answer we're hoping for.

They're starting to increase her meds again.  Half a dose today.  Gearing up to go home, whether she has a seizure or not.  Doc said he would make sure we have a new prescription of rescue meds in case she has a nasty seizure when we get home...

Thanks for your prayers, help and love!  We have felt your support, and it is much appreciated!