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. :)

Wednesday, November 11, 2009

Time is slipping away from me! I can't believe it's been so long since I last updated. I haven't even taken any pictures since Halloween...if you asked me what our days consist of and why I've been so absent I couldn't even tell you. We are just living life I suppose.

Julia went back to school last week and it's been wonderful for all of us. Even though her Pre-K class is a 5 day a week program, she is only attending school on Tuesday, Wednesday and Friday. Monday and Thursdays she has PT and OT in the morning, and on Thursdays she also has speech. I'm hoping by the new year we can reduce the frequency of therapy down to once a week so she can go to school an extra day.

She is also going to start a very exciting program called Fast Forword. This software is promoted as building literacy and improving reading skills but it also increases cognition and processing. I first read about this amazing program in the book The Brain that Changes Itself (a highly recommended read to my fellow seizure parents...all about neuroplasticity) and was determined that when Julia was old enough I'd find a local program to enroll her in. As luck would have it, the only center in Cincinnati that offers it is just a couple of miles from our house. The program starts at age 5 but there is a preschool version for kids age 4 and up that they feel will be appropriate for Julia. I placed our order today and we should have the software in a week or so. It consists of 6-10 weeks of five 30 minute sessions a week. I'm so excited to see how it goes.

Other than that she is doing great. No seizures!

Daniel is doing wonderfully too. He is so close to walking...he will stand by himself for quite awhile, take steps between furniture, walk just holding one of my's exciting stuff! I'm sure by Christmas he will be walking full-time. And speaking of Christmas...we are thrilled to be spending Christmas in Texas. We didn't think it was going to happen this year, after all of the vacation time Michael had to take for Julia's surgery he has a negative balance this year for the first time ever. But after some creative wrangling we managed to make it work. We are thrilled that we'll get to see most of our family and that they will get to see Julia in person (Julia 2.0 I've been calling her).

Sunday, November 1, 2009


Yesterday's weather cooperated was chilly (in the low 50's) but dry so we decided to do a bit of trick or treating. All week people had been asking Julia what she was going to be for Halloween, if she was going trick or treating...I don't think she really understood what they were talking about. But once it was time to get costumes on and I brought her Elmo bucket out that she used last year, it all came back to her. She was pumped and it was all I could do to keep her indoors until 6pm hit and we could start our candy quest.

I briefly coaxed her into the spider costume that she had rejected. I thought this would be the better costume since it was chilly and she seemed to like it at first...

She and Daniel each thought the other one looked hysterical.

But in the end, the princess dress won out! Can't say I blame her...she did look darling!

We got off to a good start, she was thrilled to set off down the street and was yelling "trick or treat!" as we went.

The first house we stopped at had barking dogs in the garage which scared her, so we skipped that one. After that we only stopped at two houses before she was ready to go home. She's been a little shy with strangers lately so the whole trick or treat experience was a little overwhelming for her this year. We came home and she helped me pass out candy to the kids who came by our house (when she wasn't raiding our candy bowl). Overall it was a lot of fun!

Michael and Daniel were with us too but he stayed in his stroller while we went up to each house. Poor kiddo...I didn't get any pictures of him out and about!