Dr. Neuro decided to try an ambulatory EEG on Drake. D- would be the youngest patient they had tried this test on. It was an effort to try and keep from going and spending SEVERAL days in the hospital... again. This particular doctor never thought Drake was having seizures, but I was insistent to try something or we were heading to UNC for a long stint (which I would be glad to do if I thought there wasn't something to do here first). He never had any doubts that these "episodes" weren't seizures, he just didn't have a clue what to tell me they were.
We had the opportunity to come home with the EEG test box for 48 hours. With an hour's worth of leads being glued and lots of crying to boot (both Mommy and Drake), 3 trips back to the office to have them reapplied, and every minute being on constant watch to make sure if he had an "episode" we could punch "the button" (this would send a signal to the recording box that there was a moment we saw)! It all seemed a pain, but SO MUCH BETTER than being hooked to a wall in the hospital for at least a week (not to mention the packing and preparing to go to the hospital, it's worse than packing for a week to Disney!). We had been tracking Drake's passing-out episodes for months and seemed they were happening constantly during the week we choose to to try and capture one.
Day one... NONE! Day two... D's nurse P- came to work. He does tend to have them when she's around, and today was no different. I think he gets so excited she's here to play with him that he passes out from the excitement :) We even thought of pretending to get him ready for a bath (a usual onset) and go through the motions (since D- couldn't get wet due to the electrical cords). At first I thought, "Is that it? Is he going out?" If there was ever a time to have an "episode", now would be it! When he finally went out, me and P- were jumping up and down and saying yippee, yippee, punch the button, push the button. I was calling Shane and the doctor and everyone who would listen to the exciting news!!! Is that wrong or weird?
Who cares, we got one recorded and the next day, drove to Dr. Neuro to take that mean monster off Drake's head. The next week when the doc called to give me the results... no seizures! Not anything even close!!! STill no finding of what these strange little moments of going lifeless, laughing, twitching and repeating such with-out any pattern. What was the most interesting find of all was this, Dr. Neuro said that Drake's brain waves and patterns were that of a typically developing child!
What?!?!?! Even with the part of his brain missing and the lacking growth and development? One thing I have walked away today with (at least for today)is that Drake has and is making sure to do what no other thought he could do. He's growing and proving he is big and smart and strong and is going to be here for a long time to teach us all what we need to do better in ourselves and for our world.
Thanks, Baby Drake!
