Wednesday, November 25, 2009 update

Once again it's been awhile since my last's probably going to be par for the course here on out. Sorry. Life is crazy, but good. Very very good.

And much as I would love to say Julia continues to be seizure free, we're just not sure about that. There have been no overt seizures, nothing we can look at and say definitively, yes, that was a seizure. But there has been...shakiness. That's the best way to describe it. And it happened upon waking up, which is when the seizures used to strike. Otherwise she is completely lucid, talkative, the whole nine yards. We emailed Dr. C about it and he raised her Trileptal dose a couple of weeks ago and the shakiness has gone away. That tells me yes...what we saw was neurological. I can't help but think it's related to her motor strip, where they did the MST procedure in an effort to save her right-sided motor function. Hopefully the meds will control things from here on out. It's a bummer...I'm not going to lie. I don't ever want to even think about seizures ever again. But in the grand scheme of things, it's okay. We need to have an EEG done and will get that scheduled sometime after the holidays. That will hopefully tell us more about what's going on in there.

Other than that though she is doing great. We started the Fast Forword program I mentioned in my last post and she is doing the demo programs and has learned to use the mouse. I am amazed at how relatively quickly she picked that up. She can move the cursor to an object, click on it, and drag and drop it appropriately. It's crazy. We are waiting to start the actual program until after Christmas since we will be out of town and the program needs to be done consistently for maximum results. Keeping her focused for the entire 30 minutes is going to be a challenge but I'm sure it's a common problem...she is 3, for crying out loud.

She started speech therapy this week at a new practice. Her old therapist was wonderful but the new place is just a few minutes away from our house, and it was taking up to a half hour to get to the other place. She goes twice a week and had a fabulous week with her new therapist...she was very chatty and showing off her counting skills. It's been exciting to hear her talk in longer sentences. She is also constantly asking me what things are...the washing machine...a car's headlight...a sidewalk curb. And she's retaining all these new words which is exciting to hear. It seems as though her mental processing speed has picked up. She sings songs all the time and hits the words at the right times...previously she always used to be a beat or two off.

Pictures...I've been TERRIBLE about taking pictures. But we had the kids' portraits done the day before Thanksgiving and I should be getting those back soon. Once I do I promise they'll be posted. And now I'm going to post this before something else comes up. :)


baby trevor's mommy said...

See...if you lived closer to me I could take the pictures for you!

I'm glad you finally updated. And even though you know I understand the alarm at anything seizure-ish...I'm still amazed that Julia is learning how to use the computer! That is INCREDIBLE! I meant to research the FastForward thingie. I'm so...I don't even know...just overwhelmed about Trevy's schooling. He tranistions out of EI in April...and it just feels SO important to find him the right fit. Important and very very scary and difficult. Ugh.


Done shopping yet?


Sophie's Story by Elaine said...

I don't know how I missed this post. I am amazaed that she can use the computer!!! That takes a lot of comprehension. Not that I didn't think she would get there but that gives me so much hope for Sophie. I am definitely going to google FastForword right after I finish typing this. Thanks for sharing.

That is great news that the meds have things under control. We have been watching Sophie's med levels like crazy and have increased Depakote twice since surgery. I think I am finally a little at ease at where her levels are at now. Just got to watch out for those growth spurts.