Sunday, August 28th - Day 70 Update

Hello again,

Tori bucked her recent non sleeping trend Saturday night by sleeping from 11:00pm until 4:00am then from 5:30am until 9:00am. She spent that hour and a half up but then went to sleep again. Not quite yet where we want it but closer none the less. I did have to use a couple of Valium doses to help her sleep as well.

Tori's Myoclonus was far better today due to the increased Valproate which we are now giving her. The new Valproic Acid levels in her blood will not be known until Tuesday of next week.

I also finally got Tori into her wheelchair today and we toured the entire HSH for an hour!! She did very, very well in the wheelchair today. We went down every hallway and into every room we could. We also viewed all of the pictures we possibly could and Tori demonstrated complete turning of her head as she needed to. At one point we passed a full length mirror so I stopped to see how Tori would react. She looked at both of us in the mirror for several minutes and there was no negative response or agitation from her. I sure do wish I knew what was going on in that beautiful mind of hers... We also went outside to enjoy some fresh air and we are now planning on at least one wheelchair ride a day if possible.

Tori also had many more visitors today including the DePalma's, the Hess family and friends, neighbors Mike and Linda and their daughter, and of course Guy and Sophie!! Sophie is actually spending the night with Maria at the hospital tonight. Good luck ladies!! :-) Tori interacted very well with all of her visitors today. I was repeatedly told that her awareness levels and ability to track are the best many of them had seen and it is true. She is much more aware of those around her. We have been letting her go without the bite guard as much as possible and we have been watching her tongue closely. She is putting it in very different positions inside her mouth and we don't understand why. She has also mastered jarring the bite guard out of her mouth pretty much at will... So we now put a little dental adhesive on it and she is yet to remove it.

Tomorrow we are still planning on removing the trach and placing the 'Olympic Button' into the same location. When blocking the trach, only 50% of her airway is cleared but it will be 100% cleared with the button in place. It should be interesting for sure.

Tori finished the evening with another bath and hopefully she is ready for a good nights sleep. Tomorrow all of the therapists will be in action again so lets all hope and pray for a great start of the week!!

Good night!!

-Tim