Saturday, July 11, 2009

I looked out my bedroom window today
and saw DAVID mowing the lawn.
Dad - remember how bugged David was
when you told him he had to work for his food? :)

Friday, July 10, 2009

Eye Doctor

I took Ryan to the Ophthalmologist this morning. No change. His eyes are still not focusing and he still ignores stimulus in regular lighting. Dr Cohen recommended we not worry about using the glasses for a while, and continue to do visual therapy. He also would like us to keep him posted on what the Neurologist or other dr's find.

A Rare Treat

Today was a hot and humid day. Triple digits. David, Johnathon, Ryan and I were waiting for Jessica to finish a beauty appointment and I decided to get a rare treat... Gelato! And, even more odd, I said "Yes!" to two scoops. (My kids are looking for pods.)

Thursday, July 9, 2009

More Seizures

Tuesday evening, I took Jessica shopping for dress clothes. My dear Jessica does NOT like dress clothes. She feels naked wearing skirts, doesn't like the way anything dressy looks, and thinks "it's stupid to wear dress clothes to anything but church on Sunday." So... as you can imagine shopping for dress clothes with an opinionated 14 year old was not a fun expedition. We spent several hours and came home empty handed. It wouldn't have been too disappointing to have saved the money if she didn't really NEED to have dress clothes by Monday. But with the impending deadline, it was a bit frustrating.

After we were done shopping, I dropped Jessica and Ryan off at home to go run a report for my Visiting Teaching Coordinator assignment at church. I normally give Ryan his medicine at about 8.30 am and 8.30 pm. Well, I was gone at that time and didn't think to remind Dwight to do it. I also didn't think to do it when I got home that evening ... or even to ask if Dwight had remembered to do it.

Well, Wednesday morning Ryan woke up early and he was doing the arm jerk thing about every 10 seconds and he kept doing it for about 2 hours. I gave him his medicine, and tried to feed him a bottle, but he threw up all the food and the medicine. I suspect he probably had another seizure that involved his little eyes bouncing, but the lights were off (cause it was early, early in the morning) and so I didn't see it. He doesn't normally throw up though unless he's seizing. If he throws up once during the day, he typically throws up several times that day.

I called the Neurologist and after he received the message of what had happened he asked me to bring him to the office. So we did. The Neurologist said he's having Myoclonic Seizures ... that's the arm jerking thing ... and it's not a good thing. We still don't know why. I asked about a couple of syndromes that I had read about online. He said neither one of them fit for Ryan. The primary issue with both syndromes is the seizure. Then he said, "For Ryan, these seizures are just one of a mountain of problems." I can't even describe to you what I felt/feel about that statement. It's true. I know it's true. It was just hard to hear.

So for the next month we're going to try increasing his Keppra every evening from 3 ml to 4 ml. Then we'll report back in a month.

This morning the myoclonic seizures continued but only about 3-4 times each minute. So perhaps we're seeing a little bit of an improvement.

PS In case I haven't said this before the myoclonic seizures primarily happen in the sleep to wake or wake to sleep transitions. Once he's really awake, they only seem to occur maybe once every 2-4 hours.