Thursday, November 19, 2009

We're home.

And all I have the energy to say right now is...

Can it really be this exhausting??? I am emotionally and physically drained.

Sunday, November 15, 2009

A little bit of this...

And a little bit of that.

Just to warn you...this post is going to be random.

Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.

So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!

And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.

We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.

Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.

Tuesday, November 03, 2009

Extreme highs, extreme lows...

And everything in between. That is me on a daily basis. My emotions are all over the place. It is hard to deal with. It is hard for me to separate my mood from Sophie. We are so intertwined. So much of what she is feeling at the moment dictates what I am feeling at the moment.

Lately, the extreme lows is what constitutes my day. With a little mix of extreme highs and everything in between. Because Sophie has been doing some amazing things. But we are still dealing with a lot of behavioral issues. And you just never know what you are going to get at any SECOND of the day. And it consumes me. It sucks all the energy out of me. It leaves me in a place that I hate being in. Because I want to focus on the positive. The fact that she remains seizure-free. I don't want to take that for granted. Not for one second. Not ever. And I don't want to take for granted the huge developmental gains she is making. But it is hard to concentrate on it when these behavioral issues literally smack you right in the face.

Though, I have to say, it seems we are at another upswing. Things seem to be getting better. We had a great day on Halloween. The best day I think we have had since Sophie was diagnosed when she was 6 months old. But the last time I thought that we were on an upswing, we ended up crashing again. So, I guess you can say, I am optimistically cautious. Because it is a lot for the heart to deal with. To go from one extreme to the next on a daily basis

**I have written so many posts in the last couple of weeks. Or at least attempted to. But I have never had the guts to click "publish post". And I am having second thoughts now. I am not sure why. I really haven't said much. I am getting myself worked up over nothing. So here goes.