Monday, June 25, 2012

Seventh Verse, Same as the First

Gracie had another seizure saturday morning.  I can't get into what that one was like, except to say that I'm reasonably sure she was at least partially conscious for part of it and nobody should ever have to stand helplessly by while their child's eyes widen in terror, over and over again.  Though certainly plenty of other people have.  Nonetheless, I'll be ready to buy that brain bleach whenever they come out with it.

Every. Fucking. Time. I let my guard down and think we have this squared away, this happens.  First, the facial, oh, it's probably Bell's palsy.  OK, no it's not, but her MRI is fine.  OK, one seizure, but her EEG is normal.  Fluke? Who knows.  Two more seizures, ok, we have to treat her.  OK.  Lots of kids have seizures and need to be treated and outgrow them, some really quickly.  Two MORE seizures.  OK, she just needs a higher dose, and a boost, we started her really low.  Now I am out of excuses.  Now I am petrified and my mind is going places it shouldn't go because nothing good can come from it.

The seizure guru is meeting with us tomorrow, in advance of our video EEG on friday.  I would prefer to wait until friday, rather than putting G through the trauma of two separate hospital visits, but multiple people seemed to think that there might be some benefit from coming tomorrow, so fine.  I'll come.  And we'll see.

I desperately, desperately want her EEG to show something, anything.  For the doctor to say, oh yes, of course, she just needs this drug instead, and we'll revisit things in a year.  And send us on our way.  I am worried it will be entirely normal and we will not know a single thing more than we know right now, and we will just have to throw darts at the dart board and hope we find something that works.  

I desperately, desperately want Gracie to stop having seizures, to never feel that terror again, to never miss another playgroup, and to start preschool in the fall without worrying that she'll miss a day a week, or worse, be seizing too much for them to even let her attend. 

And I desperately want to sell our house and move because even though I am still pissed off at God, I told him I would stop asking to sell our house if G was okay and she is decidedly not so He owes me.  If he's not going to help her stop seizing, then he should at least help us be closer to our families and the Y and her hopefully new school in the fall.  He owes her that much.


Heidi Bales said...

How do I become a follower?? I do a blog on this same sight and found you when I goggled "How high is a treadmill platform". I was laughing so hard reading your post. Thank you for it, too. We purchased one yesterday to be delivered Wednesday. I woke up at 2AM this morning thinking about my 6 foot son and whether he will be able to use it! We tried in vain to find the info and could not, as you well know! I started looking at your other posts and I have tears, I am laughing so hard. I could not find any place to become a follower. Did you disable it? That's okay. Just wanted to ask and to tell you how much I enjoy your writing. I just started this past April. It has been cathartic.

Crabby Apple Seed: said...

Um, so, true story: I don't know. I have followers, but don't ask me how they became followers. Aren't I an awesome blogger! I've been MIA awhile, I'm just starting to post again tonight, so your comment was really well-timed, thanks!