Thursday, September 1st - Day 74 Update

Hello again,

Tori's Wednesday night wasn't as smooth as the previous three nights... She had her trach button unplugged and did seem to sleep but was coughing quite a bit and had mild Myoclonic tremors which kept her from solidly sleeping. Her eyes were closed for most of the night but her heart rate was at 125-135 beats per minute which is not at all restful for her. At 5:30am, she finally went into a deep, fully relaxed sleep and her rate went down to the correct 90-95 beats per minute. She slept until 11:30am and I immediately brought in the occupational therapist.

Since Tori was still kind of sleepy, the occupational therapist was able to stretch her arms and hands to degrees that are not possible when Tori is awake and tightening her muscles. By the time she was done Tori was definitely up though!! We also did additional back stretching with an exercise ball while Tori was in bed. With her knees fully bent and calves resting on the top of the ball, we would rotate her from side to side. This is another exercise where one shouldn't watch Tori's face... Tori seemed to have a very tight right hip joint and we may end up x-raying it to find out why.

We also did some picture recognition drills with Tori. She does seem to focus her eyes on the picture you want her to point out but it is so hard to tell. She cannot distinctly point or anything like that at this time. So we will continue to repeat this drill over and over until we can get a definite response type of some sort.

Tori took another nap from 12:30pm until 1:30pm when the physical therapist arrived. Tori had even more stretching done to her legs then we sat her in a standard chair once again. We wrapped a sheet around her and pulled it tight against the back of the chair. We then bent her over and had her try to bring her head, neck and upper back to a vertical position. Tori tries so hard!! She can almost get to the top but eventually tires. She did MUCH better than the last time I witnessed this test. Patience and perseverance!! Tori WILL get there!!

We then placed her in her wheelchair and toured the HSH again and we also went outside for some sun and wind as well. Her total chair time was about 1.5 hours today. We placed her back into bed when we finished and the speech therapist took over for a while. I believe she ran through her standard tasting tests.

Tori also had Captain Hook come visit her today. Captain Hook is a cocker spaniel dog and he didn't really get any sort of reaction out of Tori. This happened in the early evening and Tori was pretty exhausted at that point. Apparently, dogs and cats will be common visitors from this point on.

Tori closed out her evening with another totally relaxing bath and tonight Guy and Sophie are going to be staying with her. We wish you both luck tonight!!

It was kind of a tough morning for me because one of the nurses actually dressed her in boxer shorts and a girls T-Shirt and that was the first time I've seen her dressed like that for 74 days... Tori is so stunning and it just looks like she should get up, walk around, hug and talk to me... How I long for that to occur!! Hopefully it will happen for all of us some day. All we can do is continue to hope and pray for the miracle we all desire.

Thanks again everyone for all of the support you are providing for Tori and us!! We love you all!!

Tim, Maria, Tori, Whitney and Brendan