Having fun in the bathtub

First, let me get the important stuff out of the way: Hollis hasn't had any more seizures since my last post (yay!). The docs say that it does happen, but they aren't concerned that they didn't make the full disconnection with the hemispherectomy. Her stroke was so large that there are probably damaged areas even on the "healthy" side of her brain, so it's plausible that there could be some electrical misfiring coming from there. Her neuro upped her Topamax dosage, and we'll just wait and see what happens. We're just happy that it was one: typically when she'd have tonic-clonics she would go into a cluster of them that could last all day.

We're down visiting Grandma and Grandpa, and Hollis had a great time taking her bath in their jacuzzi tub. Here's a picture (with a rare Mom sighting, because I'm usually the one behind the camera). We're trying to keep her from destroying their house too: she broke a light in half at our house on Thursday, so her behavior hasn't improved much. More on that in my next post.

!@#$%^&*!@#$!@#

Hollis had her first seizure since the surgery today. It was a tonic-clonic (grand mal) and about 2 minutes long. She was was very irritable, confused and tired afterward. We're all pretty deflated right now. I'll be calling the doc tomorrow to see what we do next.

The latent cheerleader

When we went for a walk in the park yesterday, there was a cheerleading practice/tryout with about 30 girls from ages 9 - 12. They were shouting, "Go. Fight. Win!", and Hollis absolutely loved it! She clapped and said "yay" when they finished, but also wanted more, so she signed "more", as you can see in this video. She also did her own version of the cheer: "Ack. Ack. Ack!" She really wanted to get involved, but I held her back since it appeared to be a tryout, and I didn't want to disrupt the girls. After they were done, they congregated in a gaggle around their Moms and the instructor, and Hollis went over to check them out. I told them how much she liked their cheering, and they were all really sweet to her and said "thank you". I wonder if there's a "special needs" cheerleading team? ; )

Psych

We went to Hollis's psychiatrist today to get the lowdown on her behavior issues (being wildly hysterical nonstop, inability to settle herself down, appetite for destruction, sleep disruption, angry outbursts with aggression, etc.) The behavior has changed so much from the time of the surgery, we weren't sure that it was something that was always there, and was tempered by the seizures, or whether the combination of her meds might be doing something new, now that there are no seizures to contend with.

Dr. W. felt it was probably a combination of her mental status changing after the surgery and now having the wrong psych med for her behavior. Prior to the surgery she was on an anti-anxiety med, as we had guessed that a lot of her outbursts were related to being afraid of various situations she was in (claustrophobic rooms, new environments, doc's offices, etc.). If that anxiety is not as much an issue anymore, then perhaps the medicine is what is causing all this new bizarre behavior. So, we're going to wean her off the anti-anxiety med, and see how she does. If things don't improve, or we still are having the off the wall hysteria and aggression, we'll try another med to see if we can better manage her behavior, because she isn't responding to punishment, avoidance, or praise techniques.

Back to school

Hollis goes back to school tomorrow! Hooray! I'm hoping that the routine of school will help her regulate her behavior better. In talking with the neurologist today, he says he sometimes sees behavior problems get worse immediately after surgery, as the child learns her new abilities without seizures. Usually, the behavior issues get better with time. Please, please, please!

Follow up with neuro

Going to the Neurologist today. Hopefully he will have some advice regarding the behavior issues we're dealing with, and whether they are related to the surgery. We're also going to ask whether Hollis can do without her helmet in school (she hates wearing it).