Thursday, April 7, 2011


The last few days we have been noticing little things. No big all out seizures, but definite seizure activity and signs of seizures. The other night while falling asleep he was jerking. It's normal for people to jerk a little while sleeping (ever woken up to a big jerk?). They're called sleep myoclonics and are totally normal. Ethan has myoclonic seizures among others, and 20 jerks in a period of 3 minutes is not normal. Yesterday he was back to his sleepy self, and took a very long nap in the middle of the day. I watched him fall asleep and once again he was very jerky. I noticed the muscles in his neck jerking as he slept, and that's something that used to happen all the time. Then last night he peed the bed. Ethan does not have accidents, and the only time he pees the bed is either when he's on IV fluids, or is having seizures. When this all started happening back in October he was peeing the bed alot, and it was most likely due to nocturnal seizure activity. I had a very strong feeling yesterday that something bad was going to happen. I still have the feeling. Hopefully I'm wrong this time, but something does feel off.

He is continuing to do very well on the diet. He happily eats the food, and even says the cream is yummy now! He's still hungry during the day, but he's not complaining quite as much. Now just because he is having some seizure activity, that doesn't mean the diet isn't working. In fact, it's working great! He used to have 50 seizures a day, now we're at maybe a couple a week, maybe.... It will be interesting if they hook him up to EEG soon to see how many he's actually having. His mind continues to clear up. We are shocked every day by something new he comes out and says or does. For example, for some reason whenever someone sneezes he says, "Kachoo Daddy" or to whoever sneezes, but yesterday I sneezed and he looked at me and said, "Bless you Mommy". I was so proud of him! It's little stuff like that, but it's like everything is so much clearer to him now. He's using the correct works for certain things now, whereas a couple weeks ago he would search his mind for words and couldn't get anything out. He's back to his crazy high energy self, and is finally off the couch and not sleeping all day. We have actually started to use time out again! (He's back to being naughty again too!) We stopped back in December when any time he would cry or get upset he would constantly seize.

His new partner in crime joins in with him in all his antics. He loves that puppy to death! Whenever he lays down to take a nap, Ethan will gather up all the pillows and blankets and lay them on top of him to tuck him in, too cute! He loves having a dog that actually wants to be with him and play with him, and I think Buddy is happy to not be harassed anymore. He continues to show how ridiculously smart he is. He now knows sit and down just with hand signals, and he will sit before going from one room to the other, or going outside. I haven't started all out training sessons yet, this it just here and there stuff and he picks up new commands so fast. He's already 100% potty trained and will whine at the gate or door when he needs to go out. Such a good boy!
Any pillow becomes his bed.

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