Sunday, Monday and Tuesday - December 3rd through December 5th

Hello all,

Tori had her typical, relaxing Sunday as she watched Maria and Whitney decorate the Christmas tree and the rest of the house. So our day was pretty much all work and much less relaxing than Tori's but the decorating is now done and it looks great!! Brendan was the happiest of course because Christmas even seems closer now :-)

On Monday, Maria and I took Tori up to the PCMC (Primary Children's Medical Center) in Salt Lake City for an appointment with the rehabilitation team. We laid Tori on a padded table and they proceeded to take new range of motion measurements on all of Tori's joints. They pushed and pulled on Tori's legs, knees, ankles, toes, hips, shoulders, upper arms, lower arms and hands. They basically measured Tori's flexibility, or more realistically inflexibility, by measuring the degrees to which she could actually bend her joints. We then compared the results to those taken before the baclofen pump was placed and Tori has slightly improved on most fronts but her elbows, left knee and ankles are worse... Tori will need surgery on her ankles (her feet are pointed outward like a ballerina's) and left knee (it is hyper extended due to her muscle tone) before she can be placed in a standing frame or tilt table again. We really need to get her back in a standing position as it helps build all of the upper torso stabilizing muscles as well as her organs mainly because, humans aren't designed to be laying down all of the time... It's unhealthy.

Tori's spasticity and corresponding muscle tone is still very high in her arms, shoulders, chest, upper and lower back and abdominals... Tori is basically flexing her entire upper body while she is awake. Try flexing your biceps for about two minutes straight to slightly see how this would feel then imagine doing it all day, non-stop... Tori is also receiving the maximum dose of baclofen she can have at this point so we are going to now start giving her steady doses of Artane in addition to the periodic Zanaflex . Hopefully we can make Tori much more comfortable by can 'loosening' her up even more. It is a constant battle... If all of this fails our last approach will probably involve Deep Brain Stimulation . I am beginning the investigation stage and thankfully there is an expert in this field who happens to be in SLC.

Tori was unfortunately anxious and agitated for most of the day on Tuesday... She worked herself up to the point where she vomited again. She hasn't been that riled in some time either. She had some Strawberry Banana fruit smoothie tonight that calmed her for a few minutes but she was just 'on one' all day as Maria would say. We are hoping and praying for a better day tomorrow.

In closing tonight, here is another promising story on stem cells curing diabetes .

Thank you all as always,

-Tim