Thursday, September 29th - Day 102 Update

Hello,

When we arrived this morning the first thing we noticed was that Tori had virtually NO myoclonus!! When we left last night she was administered her first dose of the 'missing' Valproate and she received another just prior to our arrival. The results are amazing as Tori has no more extreme limb jerking or eye twitching and you can even touch her now without her going ballistic. She is very much at ease again just as she was when we arrived at the UVRMC. Now if we can her out of the ICU once again we can get moving on the therapy and rehabilitation once more... And I am also still investigating how the Valproate was missed in the first place!!

We kept Tori off the ventilator this morning until about 11:00am when we had to help her out a little. Tori's breathing is definitely not as strong as it should be and the x-ray on her lungs today still show them to be very clear. So there is confusion amongst the ICU medical staff... She continues to get temperature spikes which typically means there IS a bacteria of some sort in action. We took additional blood, urine, stool and phlegm samples again this afternoon and sent them to the lab. We also switched one of Tori's antibiotics and added a third. So she is on Vancomycin, Levaquin and Primaxin now.

We haven't received the results of the EEG they did on Tori to see if the limb jerking was caused by seizures. We definitely do not believe they were since the Valproate has all but eliminated them. But we would still like to hear about the EEG results and compare them to Tori's previous two. I read the previous two and the final analysis on both was that there was only minimum abnormalities from a normal EEG.

Since Tori's heightened sensitivity has diminished her minimal PT exercises of basic hand, elbow and arm stretching went fairly well today. We keep rotating her leg braces on and off but still haven't attempted to put her new arm splints with the finger separators on...

Alright, we are still waiting to get out of the ICU and our next location is still unknown.

Thanks again everyone,

-Tim