Thursday, September 15th - Day 88 Update

Hello again,

Tori's sleep cycle appears to be mostly back to normal now. She awoke again for Maria around 3:00am Wednesday night but quickly went back to sleep after her repositioning. She then slept very soundly until 8:00am or so. Today she had an extreme amount of therapy and she seems exhausted from it. It's 9:00pm and she has already fallen asleep.

Tori is now getting 85 milliliters per hour of the new, Nestle Double Calorie, Nutren 2.0 Vanilla flavored feed!! We are hoping that it fattens her up twice as fast of course and I will wait for my great friend Guy to get back from France to have our own, personal Nutren 2.0 toast to celebrate!! :-)

Since Tori's pain is primarily due to her SMA Syndrome we have taking the appropriate measures to minimize her pain. There are several positions which help SMA Syndrome pain one of which is prone, or lying face down on a flat surface. We obviously cannot do this one quite yet so we are relying on the other positions which are either standing or keeping her upper torso in a vertical position. So today during her OT and PT she was either sitting upright in her bed or sitting in a normal chair. They bent her over again so her hands touched her toes numerous times to provide the complete, lower back stretch Tori needs. They also had Tori standing again during today's session!! Much more of that to occur moving forward!! After standing they had Tori reaching around a large exercise ball to hold it for several seconds at a time. Tori's arms and hands also went through the normal stretching routine and when they finished ALL of that they finally placed her in her wheelchair. She spent a good 1.5 hours in it today and Maria even took her outside once again. The painful winces and grimaces are definitely diminished when she is in a sitting, upper torso vertical position. She can now expect to be positioned in this fashion most of the time.

Tomorrow morning Tori will get her new GJ-Tube placed. We are greatly hoping that the new style of tubing they are going to use truly does work and stay in place... Tori's feeds will need to be shut off tonight at midnight in preparation for this procedure. Once the new GJ-Tube is placed the NJ-Tube in her nose can be removed again and her face will be cleared once again!!

Maria DID end up plugging Tori's button trach for about 1.5 hours today!! Tori did quite well so tomorrow we will try and go for additional time. The antibiotics are finished and the only reason Tori needs her foot IV is to replace all of the fluid she is losing in the Bilious output from her stomach. She is still putting out too much bile out of her stomach... Some of that can also be contributed to the SMS Syndrome.

I guess that is all for tonight. I will state that Tori in general is just looking much better now and her behaviors resemble those prior to 11 days ago when we arrived again at the PCMC. Tonya, Tori's technician today who has watched her numerous times, told me she saw clear response to instruction today for her first time. Tonya asked Tori to open her mouth so she could brush her teeth and Tori obliged and she obliged again when she asked Tori to close her mouth when she finished. It will be GREAT to get fully back to this type of therapy and rehabilitation once again!! :-)

Thank you all and good night!!

-Tim