Thursday, April 21, 2011

Is it weird that...

I thought Sophie's little pee-drenched footprints were oh so cute???

It was 5 minutes before midnight. I was in the bathroom brushing my teeth when I heard Sophie coming down the steps. I knew it was her (Elsa had just woke up moments before and already crawled into our bed). But her footsteps sounded a little different (as I hear them every single night right around this time). I knew something was off.

Her pajama pants were soaked.

It has been so long since she has had an accident that I can't even remember. It still makes my heart skip a beat (in a happy way) that she is potty-trained. So proud of her.

Anyway... So Brandon and I cleaned her up and slipped some new pjs on her. And I went on the hunt for the pee spot...thinking it was probably going to be in her bed. Nope. It was those cute little pee-soaked footprints in front of her bathroom door. She tried. Just didn't make it.

(By the way, I just think I am in an extremely good mood tonight because I went to a workshop on ADHD and met a very knowledgeable psychiatrist that is willing to take us on as a new patient even after explaining Sophie's complicated history. Her ADHD has been wearing on me but even more so is trying to find the help/support that we need to deal with this issue. It seems the medical community is more focused on her epilepsy and how complicated and different her case is because of her brain surgery. The psychiatrist did admit that he has not treated anyone like Sophie but that it didn't mean that he wouldn't try his best to help us. doesn't take much to make me happy.)

Friday, April 01, 2011

The flip side...

Before I continue on with my positive streak (I know one positive post doesn't constitute a positive streak but that is the direction I am going to try to go in), I will update on meds and seizures.

Since Sophie had her third relapse since surgery, we have made the following med changes... Weaned Dilantin. Added Vimpat. Weaned Vimpat. Reintroduced Dilantin. Weaned Depakote. Weaned Dilantin. Added ACTH. Weaned ACTH. Added Prednisone. Added Zonegran. Weaned Prednisone. Added Vigabatrin.

So, currently, she is on 225mg of Zonegran at night and 500mg of Vigabatrin twice a day.

She is tired. She is very wobbly. She is not talking as much.

She is only having one small, very mild cluster in the early morning.

We are waiting to increase Vigabtrin in hopes that some of the side effects will subside. We may have to decrease the Zonegran. And I hope with every last ounce of my being that Vigabatrin will work. Because the next option is to seriously consider surgery. And something as simple as putting on her backpack will no longer be simple. And I cannot bear to go there.