Wednesday through Friday, March 12th through April 18th

Good afternoon,

Tori’s health and overall demeanor remain well and her daily routine of home health care and therapy sessions continues. She is now fairly consistent in her whistle blowing and Meredyth has been working with Tori to make her exhale more forcefully for increased loudness of the whistle. This may prove meaningful in the future because it could possibly lead to a form of communication where Tori would rely on a whistle to garner our attention. Whether she has the cognitive ability to achieve this action remains in question but we have to keep trying for any consistent communication medium to truly know. All of us want to believe in Tori and hopefully there will come a day when she will prove to us what she truly knows and can do.

Cari did some more range testing on Tori’s joints and limbs and recorded her best measurements post the China trip in January of 2007. The continuous PT sessions and efforts are working and it would be wonderful to get her the levels achieved during her 32 day stay in China where she received 2 hours of PT and acupuncture each day. Definitely progress on this front!!

Jake continues to visit Tori for three days a week and does various activities with her. I’ll provide a more detailed description of those in the next update but most are classroom centered whether it is French, comparison activities in math and English and Tori’s favorite fashion.

Tori had her latest round of botox and phenol injections this past week. She gets them four times per year and typically her muscle tone and spasticity are at extremely high levels as she reaches the end of a three month period since the last injections. Her agitation and anxiety are also peaked at this time because of great discomfort… But we didn’t see those symptoms nearly as much as in the past. We are not sure what it means of course and her physical therapy doctors don’t really have concrete ideas either. I guess it could be considered progress but now it’s time for some Google research to see if I can find any actual meaning behind it.

Tori also received the new splints built for lower legs and feet from Shriner’s Hospital during the same trip to SLC. We will begin using them at timed intervals and will see if she acquires any pressure sores from them. They appear to be more padded and comfortable than the last set which caused really bad pressure sores on her feet but we shall see.

My parents, Grandpa and Grandma Schmanski, have returned from their winter escape!! They now have their motor home parked at the house and will be spending some time with us for the late spring, summer and early fall. Their presence and support is GREATLY APPRECIATED and we love them so very much!! Having their assistance will provide our family a few more breaks, releases and most importantly some rest and relief from all of the daily tasks, hardships and challenges of providing care for a 100% dependent child or person. Only those who live it truly know how demanding and involved it actually is and our thoughts and prayers are with all of you.

Thank you all as always,
The Schmanski's - Tim, Maria, Tori, Whitney and Brendan