Thursday and Friday, September 14th and 15th

Hello again,

It has been a tumultuous past couple of days... It all started very early Thursday morning when Tori had another seizure but this one was much different than any seizures she had previously. She was grinding her teeth and generating large amounts of saliva and her eyes were moving back and forth horizontally. She looked very angry and was turning her head forcefully from side to side as well and lastly, the seizure probably lasted 3-4 minutes... It was quite scary because we didn't know if she was going to come out of it or not and in addition to that she wasn't swallowing all of the saliva and we couldn't get a suction yonker into her mouth to get it out because her jaw was locked and teeth clenched.

We were greatly relieved when she came out of it and as usual after a seizure she was completely calm and her body was very, very loose. The seizures must sap every once of energy out of her. Of course we had no idea why she had this new type of seizure. During the day Thursday Tori ran a fever and was also vomiting at times. Again, very sudden changes and nothing had changed medication wise so we were stumped...

Thursday night and early Friday morning were no better as Tori didn't really sleep, still had her fever and was quite agitated. We also got the results of her blood test that showed a 116 level on her valproic acid. Our goal is to have that between 90-100 and we expect her body to adjust and that she will get to those levels with the current 2000mg per day of depakote. We will see when the next blood test is taken in two weeks.

Friday afternoon during another evaluation with 6 alpine school district members we received a call from the PCMC rehabilitation team. They were wondering why Tori hadn't been in for a baclofen pump refill and we told them she was supposed to have received a refill while we were at the PCMC in July. Well, needless to say the refill never occurred during Tori's July stay... So basically Tori was out of baclofen which turns into a life threatening situation after a few days. Maria and Grandma Schmanski rushed her to the PCMC immediately and her baclofen pump was indeed empty. They estimated she was without baclofen for about two days and the seizure, fever and vomiting are all symptoms of baclofen withdrawal of course. Itchiness and nausea are other symptoms but Tori can't indicate those to us. So Tori is filled up once again and is receiving 1121 micrograms of baclofen per day.

So yet another unfortunate learning situation I guess... The PCMC rehabilitation team has just upgraded to a new system were tracking baclofen pump refills is automatic instead of manual. Hopefully this will never happen again.

Prior to taking Tori to the PCMC I was demonstrating the EagleEyes software to everyone in Tori's room. Tori responded very well with the large group of strangers in her room. Her eyes shifted nicely from person to person surrounding her bed during them introducing themselves. Then Tori tried the paint, aliens and Clicker applications. We only had 30 minutes before we left for the PCMC but I did receive some additional software to try from the team. So the experimentation will continue.

After two days filled with excitement we are now hoping for a calm and relaxing weekend.

Thank you all,

-Tim