Monday, August 21st - Day 429 Update

Hello everyone,

Tori slept wonderfully Sunday night and was calmer today than she was over the weekend. She still has the myoclonus at times though and it is often hard to witness her trying to deal with it since she has absolutely no control over it... It was really evident today when Andy gave her an OT session. She has very shaky as Andy completed stretching her arms, hands and shoulders and was pretty unstable during her sitting and trunk control as well.

Grandma Harris also arrived again today to help us out during the week. Tori spent more time on the deck today and had some small bites of a Carl's Junior $6 burger and some tastes of a fresh peach as well. Tinkers the yorkie also had some of the same :-) Then they both came inside and had some more small samplings of ice cream for dessert. Tori did very well with her chewing and swallowing once again.

Tori is getting ingrown nails on her big toes so Maria is trying to schedule a podiatrist to fix them. They are very sensitive to the touch and they are obviously causing pain for Tori. Tori has had them off and on over the past year but this time she will need some help to get them healing again.

Tomorrow Whitney begins junior high!! She will be in the 7th grade, have a locker, alot of classes and alot of new friends we are sure!! :-) Brendan will also start kindergarten later this week though he is not nearly as excited as Whitney... This time of year is another bittersweet period for us all as Tori always looked forward to the new school year... And we greatly miss having her excitement, smiles and joy surrounding us. When Maria registered Whitney at Oak Canyon, Tori's old school, the teacher assisting her asked if she was Tori's mother and after hearing Maria's reply she broke down emotionally and said that Tori was one of her favorite students and she is missed greatly by all of the staff at the school as well. We share in your pain but small encounters like this certainly help us all in supporting Tori on her journey.

Please continue to keep Tori in your thoughts and prayers and thank you again for all of your support,

The Schmanski's
Tim, Maria, Tori, Whitney and Brendan