The waiting game continues!

Here we are, at the hospital, same condition we were in on Thursday.
When I brought her in Wednesday she was "post dictal" as they called her. She was post seizure in other words. She didn't talk, respond, or interact much with anyone. However, her last seizure happened while they were hooking her up so it didn't count. Now we have been there 5 days, slowly decreasing her medicine (the one I said wasn't doing anything to begin with) and still no seizure. Our office dr comes in tomorrow and I can't wait to ask him how he feels about that. To say, I know you thought it was too rambunctions, but now can we try it my way???
I just don't think it's any healthier to keep her for over a week doing it this way than it would be to just trigger the damn thing and get the answer, but what do I know, I am only her mother. It's times like these that I would like to get my degree in medicine. Just to say, here is my credential, now can you just listen to me? I want OUR doctor back, the one we started with, the one we were referred to, the one who seem to have such a connection with us.

Right before Camryn went in I ran into her preschool teacher who's son died from mitochondrial disease. (I know I spelled it wrong, LOL) and to talk to him and know what it feels like from the other side just drives me that much further to find out what is going on, but also to live every day like it's our last. I have to think that each moment is precious, even when I feel like pulling my hair out cause it is. It's a precious moment connected to another and another, and finally making up the memories of my life, and my family's life. So we are looking into doing the relay for life walk next year for Mike and we are going to do the Epillepsy walk next year as well. I will be working on this stuff with my mother throughout the next 6 months or so, and I will keep things posted and updated here.

I can't believe that by the time Camryn is 5, we might not have to deal with this stuff anymore and actually be able to take a plane to Disney World. I am so excited!!!

Ok, better go, need to get my work done!