Saturday, April 09, 2011

Sometimes you just know you made the right decision

Well, the schedule change is going very well. Now that Emily has 2 mornings of therapy and 2 afternoons of school (on alternating days) she is doing SO much better. She has been having lots more good days at school. YAY! The therapists have also said that she is doing well with them. The speech therapist was the one that was having the most trouble with Emily because she tended to see her on the long days. She was not cooperative and the speech therapist was starting to wonder if she could really handle the tasks she was giving Emily. I knew that she could, but with Emily being so tired and cranky she wasn't really showing off her skills. That has changed now. It makes me so happy to hear that the therapists is able to see my girl doing the things I KNEW she could do all along.

So for the first time in a while I feel completely confident about the decision that I made for Emily. Isn't it nice when that happens?

This week Emily helped me to make another decision. She is so good like that.

Her video EEG is coming up in a couple of weeks. I was thinking about cancelling it because she had been doing well. After our last experience, we did not want to go through this test only to have them not see anything. I would much rather sleep in my own bed, thankyouverymuch.

Well, on the way to therapy at Children's the other day, Emily had a seizure in the car. We were in rush hour traffic at the time, so I am not sure how long it was going on before I noticed. What I did see lasted about a minute and scared the living daylights out of me! Her seizures lately don't look like any other seizure I have ever seen. She basically looks like she has something in her eye. She has her eyes closed and they are twitching (kind of like a blink but without her eye actually opening in between blinks). In the car, she also was shaking her head back and forth and drooling profusely. I started to call her name and she did not respond. I tried to get over to the breakdown lane, but by the time I did it was over. So I just wiped off the drool and chatted with her for a few minutes. She was perfectly fine. She doesn't get tired or irritable after these seizures. She is usually quite happy, actually. So we continued on to therapy and I just let them know what happened so they could be on the lookout for any more seizures or any odd behavior. She ended up doing great at therapy.

The only thing I noticed for the rest of the day is that her startle reflex seemed to be on overdrive. She startles pretty easily on an average day, but after seizures, it is much worse. She is very jumpy about noises, movement and even some touch.

I didn't get to talk to the neurologist's nurse until yesterday afternoon, so I won't hear back from her until Monday. She said the doc probably won't make a med change before her EEG. And the EEG will give us a good idea (hopefully) of Emily's patterns and then a decision can be made about meds. She still has some room to go up on her current meds so that would be my first choice since she has reacted so well to it. I am just getting concerned that she may be building a tolerance to it because she has been on it for so long. We have increased her med twice since January and both times she has had seizures about a month after the increase. So I guess we will have to wait and see what happens on the EEG.

At this point, Emily sounds like she is starting to get a cold. She hasn't had a fever, but maybe the sickness is what caused the seizure. We haven't seen any seizures since Thursday, but you can bet I will be watching her like a hawk!

1 comment:

Anonymous said...

I'm so glad to see the new schedule is working so well! That's awesome!

We'll also be praying that the seizures subside and the EEG goes well for her, and YOU!

As I've said before, I love this blog. It's such a testimony and it helps those who love the three of you to focus their prayers for specific needs. Even though it may be hard to post very often and large gaps of time may fill inbetween, please don't stop posting what is happening in your little family as you "Go wherever He leads".

Enjoy the weather.