"Sticker Day"

Sophie's been taking her Depakote for one week now, and although it does seem the seizures are less often, they are no where near gone.  She continues to have about one every twenty minutes if not every five.  I've learned it's not uncommon to have 50 to 100 seizures a day with this condition, it seems to me that many days she has more than that.


Today, Sophie and I woke up at 3:00 am to prepare her to be fully sleep deprived for her EEG.  We started our morning with cartoons, then Walmart, then Denny's for breakfast (I highly recommend their new Strawberry Pancake Puppies by the way), next was a park and then home around 7:00.  The family spent the morning running errands until it was time to head to the hospital.  Sophie handled the exam perfectly, she sat still and was quiet while the "stickers" were put on her head, she closed her eyes and opened them when asked for the strobe light, she blew on a pinwheel for three full minutes (hyperventilation again), and then fell sweetly to sleep for the finish of the test.


I saw her have various seizures during the hyperventilation, but no other time.  When it was over, I said to the tech, "She twitches a lot in her sleep but I don't know if that's due to seizures..."  She replied, "It was, she had a lot of activity while sleeping--she's pretty bad.  I probably shouldn't say anything, but I'm a mom too and I'd want to know."  There went the air.  I was hoping for normal or not-so-bad, I was betting against, "pretty bad".  The tech was going to call the neurologist to get him to read the test stat since we head out of town Friday for a vacation in northern Wisconsin.  


Tomorrow we start the morning dose of Depakote along with the evening one.  I'm guessing with time, we'll end up at three doses if the tech was right and it's as bad as she said.  I've trusted God through all of this, and find peace knowing "The Kingdom of God is at hand".  I stared at her beauty and prayed for her while she slept during the EEG.  I know she is so much more than this and I don't want it to become her.  I hope that by journaling about it here I can remember each stage and look back someday to see how far we've come.


I've attached a picture of how we're continuing to let her live her life. This is what gives her the most joy even though we hold our breath that she won't have a seizure while doing it.  She tends not to lose her hands when she goes absent though, just her eyes and train of thought so I think we're safe.  Even so, this will probably soon be on the list of things the doctor tells us not to do, but we love her smile and her laugh and won't let this new journey stifle them or the fun in her life.