Becoming routine...

As I write this my heart is still pounding hard in my chest from waking up to seizures so early in the morning. 3:30am, 4:30am, diastat, she's out for the count... 

Seven days seizure free this time. 

I was so ready to be torn away from work yesterday but it never happened. Today, we should make it to school on time. I feel so comfortable with the team of people we have working with Izabelle. They will be ready to take over when I get her there. This cycle has become a routine. I think we have a plan for almost every deviation.

Now if only I could just sleep one more hour...

We will be off to Boston Thursday night for tests on Friday. A third MRI and a spinal to check neurotransmitter levels. Wish us luck. 

Still holding onto a few silly strands of hope that we find an answer. 

Disappointed again...

Izabelle had a lot of morning seizures yesterday but we didn't use diastat. I'm sick of the side effects week to week and hate that her body is becoming dependent on it. We took the opportunity to try to combat the seizures with cannabis and learned it didn't work yet again. It's very hard to time it. There are still a few things we can try. We have friends who use cannabis as a rescue and it will stop the seizure in its tracks. I wish this were true for Izabelle. I will try anything. As I expected, this morning she had another grand mal at 4:30am. I administered diastat because I know that she will continue the same pattern throughout today and tomorrow without it. If Dale and I didn't have to work, maybe we would just ride it out and experiment with cannabis some more but we can't. This summer the cycle went three days... I almost took her to the hospital. 

Izabelle will probably now be  'seizure free' for another four-six days until we do this all over again. So sad for her that really out of a week she only has about three-four days of normalcy. I know others suffer worse and so has she. This may be the best we can do. 

I'm hoping the Banzel has regulated in her system at this point. I'm going to work on scheduling another EEG but I suspect there isn't improvement even with three pharmas. 

Today, Kristine Binnet from the Epilepsy Foindation is presenting at both daycare and school. We are in the thick of it. I hope Izabelle recovers enough to be a part of it. Poor thing will be loopy today.