Monday through Thursday, May 21st through 24th

Hello there,

I should have posted this a little sooner I guess but Tori is alright at this time and back at home as well. We removed her from the PCMC in SLC on Monday around noon. She left the hospital with a baclofen dose setting of 1000 micrograms per day. As soon as she arrived home she immediately took a nap and slept much more comfortably throughout the night. It is very apparent that Tori knows where she is at and being at home is much, much better than being in any hospital... I'm sure all of us would agree with that.

Tori has continued to sleep much better through the week and is back on her normal feeding routine as well. Meredyth stopped by for an ST session on Tuesday and was able to work well with Tori once again. Tori's muscle tone is better than it was but still high. She is going back up to the PCMC for another adjustment next Tuesday and I'll request another lumber puncture to her spine so we can compare it to last June's results. Tori's surgeon does not believe the baclofen pump is working but if they are refilling it again every 3-4 months it's obviously pumping the baclofen somewhere. But is it going into her spinal fluid?? That is what we are going to find out.

Speaking of Tori's test results from last June I'll provide a quick recap of what actually happened. Tori had a lumbar puncture where spinal fluid or CSF was taken and then analyzed for several weeks in a lab. They are checking to see how much baclofen it contains and compare it with how much the baclofen pump is outputting. The issue is there are no clear statistics available to determine whether the baclofen in the CSF is the correct amount based on that output. So there are 'reference' points you can compare against. Almost 99% of the time the results show the pump is either totally working and baclofen is delivered or it is not and NO baclofen is delivered and the reference points both high and low indicate this. Well Tori's results were in the middle of those reference points and this is something they have never seen before... Tori's trendsetting and unique qualities appear once again!! They didn't know how to decipher that reading and since there is no shared data on this available they worked off their own statistics of children they have done at the PCMC and deemed that Tori's pump was 'working'. I would have probably guessed the same because again, the baclofen pump was certainly delivering baclofen 'somewhere'. And that is it in a nutshell and we will perform additional tests on Tori to try and determine what is going on with her as much as possible.

Thank you all once again your thoughts, prayers and support.

Tim, Maria, Tori, Whitney and Brendan