Time To Do the Laundry

Tomorrow will mark the 7th anniversary of Kellyanne's 1st seizure. I was at Hershey Park with the kids, my mom and my aunt. I didn't recognize it as a seizure. It wasn't the shaking, convulsive kind. My baby just left me for a few minutes, although it felt like a lifetime. It was by far the scariest moment in my life. Ask anyone there, as I stood by the carousel and screamed for someone to help me. It was at Hershey Medical Center that she was diagnosed with Subcortical Band Heterotopia. I was just so thankful she was alive, the words really meant nothing to me at the time. After an MRI a few weeks later, the diagnosis was confirmed SBH and PMG. We met with a renowned Dr. at Johns Hopkins and she was in awe at how well Kellyanne was doing considering the picture she had studied of her brain. She had already surpassed the expectations of what the MRI would suggest a child capable of doing with a brain as abnormal as the one in the picture. It was a "continue what you are doing therapy wise and wait and see what happens" recommendation. And so we did. The next seizure was almost a full 2 years later and then the next a year and 1/2  later. Unfortunately, it was at that time that the seizures didn't go away. The medication dosing game began and we are still playing it today. It's not a fun game and sometimes you want to quit, but you can't.

On Tuesday we will take Kellyanne into yet another specialist to get hooked up with electrodes on her scalp and an ekg monitor and we will bring her home for 3 days. On Thursday we will take her back to get the electrodes removed. The info gathered from this 48 hour eeg will hopefully give us insight as to how to best treat KA at this point. She's enetering puberty and from what I have read, things have a tendency to get worse at this stage and then, hopefully,  better.

KA doesn't seem bothered by the seizures and they are still non-convulsive in nature. But they are tricky little buggers. They come with her sleep/wake cycle. Many times we sit and watch and we have to ask, was that one?  Lately, there has been no question, she will twitch and jerk for longer than wanted periods of time - so obviously, it seems time for a major medication adjustment, not just a tweek. The question is, which one, how much, etc. The seizures are no longer frightening to me.  She is able to function through them....eat, walk, talk, watch tv, etc. but they are frustrating. And her night waking.....3, 4, 5 time a night, are they seizures, or not?  This is really the reason for the 48 hr eeg - to see what's going on at night.

And so I sit and think, and do nothing but sit and think and dwell in frustration. Time to do the laundry - a mundane task that keeps me focused.

This is what is so dizzying for me.......and I'm not the one having the seizures!