Monday, October 25, 2010

Quite the imagination?

I was decompressing somewhere in the house. Brandon was giving all the little kids a bath. Sophie was screaming her head off. Which is very UNusual for her. She loves bath time. She is constantly trying to find a way to take a bath or shower several times a day. But things have been off lately...ever since we started weaning the Dilantin.

I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.

So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.

She immediately calmed down and smiled at me.

So I asked her... Why were you crying?

She replied... I was scared.

Scared of what?

A raccoon!

A raccoon?

Yes! It was at the front door.

It was at the front door?

It smell me.

At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this article.

Tuesday, October 19, 2010

EEG results...

We met with the neurologist the morning following the hookup. It is the hospital's procedure to go over the findings and to be sure we got all the data we need before they disconnect. Of course we did, since she has these "movements" every single day. Usually, she has several of these episodes in a 24 hour period.

There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.

She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.

We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.

So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.

Wednesday, October 13, 2010

Our Day in Pictures...

Happy 5th Birthday and 24 hour video EEG...

Holding her favorite sticker book (thanks Grandma).
If your child loves Sesame Street, I highly recommend this.
She is learning lots from this book.

No...she wasn't this happy.
I asked her to smile and she obliged.
But not one tear was shed.
We were able to easily distract her.
Especially with her birthday present she got moments iPad.

A birthday sign she had made at school.

Her incredible nurse decorated her door with the Happy Birthday letters.

Aunt Diane came by for a visit and gave her some fun books to read.

The hospital (along with a gift bag put together from a local girl scout troop) gave her birthday presents and balloons.

She has never before been interested in birthday presents.
But she ripped right into these!!!

Sophie's nurse and someone from Child Life Services.

Uncle Jason brought Sophie her favorite meal (chicken caesar salad from Panera).

Sophie's beloved Grandma came and stayed the day with her.
There is no one in the world that she loves more.

Singing Happy Birthday to her.
She pretended to blow out candles.
Too cute!!!

She had some fun with the icing on her cookie cake.

Uncle Jake came by for a visit and brought her a fun birthday present.

Daddy and Sophie.

Sunday, October 03, 2010

Video Clip...

Because I am seriously slacking on posting.

Because someone asked me if I am done blogging.

Because I just cannot find the right words.

So here is a video* for you all to see just how well Sophie is doing. Especially when you compare it to this video from a year ago (where I am requesting her to say words compared to actually having an on-going conversation with her now).

*I hope her chewing food doesn't distract you from the video. This is when her concentration and stillness levels are at their highest.