Thursday, August 4th - Day 46 Update

Hello all,

I have been starting with Tori's nights in my recent updates because they typically have a direct correlation with how her day will turn out. Tori ended up having another 3 Valium doses after her Wednesday night at 9:30pm Valium and Zanaflex doses. She wasn't quite as restful as the previous nights but she did go into one of her deep sleep states from 6:00am until almost 10:00am this morning.

She awoke and the therapists began their work. The speech therapist used ice water today in Tori's mouth and she didn't really like the coldness on her teeth but she did swallow the water just fine. Next the occupational and physical therapists came in and we sat her up in the bed again. She did well with this exercise just like yesterday.

Immediately following the therapists the Neurology Team entered and said the EEG would be done today rather than Friday. So they glued about 40 probes all over Tori's head and at 1:00pm they began gathering the brain wave data. One could easily see the activity during Tori's rhythmic twitching. Tori gave them various flavors of data throughout the day including no agitation or movement at all, minimal agitation and movement and finally a Thalamic Storm with maximum agitation and movement... The Thalamic Storm occurred this evening and the probes will remain on her head until tomorrow at 1:00pm so we will have a full 24 hour data cycle. They also used a video camera and record Tori through this entire process so her actions can be matched with the EEG data. Hopefully we will have an answer to Tori's twitching condition after everything is evaluated. Perhaps then we can adjust her medications accordingly.

The Botox in Tori's arms seem to be taking effect already since it is much easier to get Tori to relax and move them. We are looking forward to additional progress during the next several days.

We began Tori's feeds again today at 15 milliliters per hour and Tori also had another bowel movement this afternoon. But she also slightly vomited again early this evening so they removed about 5 large syringes full of Bilious substance from her stomach to prevent it from coming up as well. Tori's digestive issues are still not under control... Maria is meeting with the doctors tonight to analyze this again. I am in Park City with Whitney and Brendan tonight so please offer an extra prayer for both Tori and Maria's night to go smoothly. Tori was getting Valium, Zanaflex and Hydromorphone at 9:30pm tonight to try and get her to sleep early. She did not sleep at all again today and we are having zero success in trying to get her to nap during the day.

The vomiting continues to frustrate us and it is still our major concern at this moment. We are hoping the doctors can begin to provide some answers as to why this keeps occurring. It just has to be corrected as soon as possible...

Thanks everyone,

-Tim