Monday, Tuesday and Wednesday - March 5th through 7th

Hello again everyone,

Tori is remaining healthy but her agitation levels are continuing to rise unfortunately... We feel it is due to the extreme tightness in her upper body and limbs and it will be hard to wait for the next round of botox and phenol shots she desperately needs to reduce the tightness. She has been really 'riled up' the past few mornings and that causes vomiting, profuse sweating and again even more tightness in her body. We've had to use xanax, zanaflex and valium quite a bit lately to help control her agitation levels.

She does well during the times when she is calm so we are hoping for more of that time. We have been feeding her yogurt and applesauce daily with the goal of one full container per serving. She has been devouring popsicle pieces as well and she seems to be drooling a little less than before. Perhaps she is getting better control of her mouth and throat at this point.

She has had her first PT and ST sessions of the week with two more remaining. Meredyth brought in makeup, mascara, a comb and some toothpaste. Tori selected the correct items based on questions like "Which one goes on your eyelashes?" then Meredyth applied some of the items on Tori if she indicated to do so. They did more facial and mouth control exercises as well and Tori was able to suck some liquid candy out of one of those 'candy baby bottles'. That is a pretty big step actually because if she had start using that 'sucking technique' we can eventually get her using a straw. Tori also went through the PT session with Shawn without much concern which is of course good news.

I have scheduled an acupuncturist appointment for Tori and I am looking into a few others as well. It might take trying a few of them to find the right fit. It is supposed to warm up this weekend so hopefully Maria will be able to take Tori outside for a while. I'm sure she is tired of being locked up in the house all of the time... Brendan and I leave for Disneyland Friday night and will return Monday evening. We are both looking forward to the trip but we are already missing having our entire family with us to share in the experience.

Thank you for all of the love, prayers and support!!