Hello again,

We are all now back into the standard routine of providing Tori's daily care and facilitating all of our other family needs. Brendan and Whitney remain heavily involved in their school activities and Whitney continues to follow her passion for dance by practicing up to 5 hours per day. In fact, Maria, Whitney and Brendan spent this past weekend in Ogden at a NYCDA competition. They stayed overnight at my brother TJ's house who lives a short distance away. The kids were able to spend some quality time with their cousins which was nice to see once again.

Tori, Tinker's the Yorkie and I spent that weekend at home where we cleaned the house and tried to relax as much as possible. Tori has remained healthy and her progress on learning and physical abilities is about the same as it has been for some time. Since her botox and phenol injections several weeks ago she has exhibited much more control of her hands and arms. We typically see this right after the injections and it eventually fades as the botox wears off. But we are taking advantage of this control and range now during her PT sessions where Tori has improved. Cari still provides the sessions twice per week and runs Tori through a full range of motions on almost all of her limbs and major joints. We also provide this exercise when we can but could probably do far better than we are currently... We try and get Tori into her wheelchair daily in the late afternoon or early evening time frame. Another nice result of the injections is that Tori can sit more comfortably in her wheelchair with her arms naturally positioned on the arm rests. Yogurt, ice cream and other soft foods are still her favorites and we typically feed her while she is in her wheelchair. She can still consume a whole yogurt with only minor or no coughing so her ability to eat remains stable with small amounts of soft food. She doesn't gag or choke nearly as often as she used to but we are still gauging just how much we can feed her without a vomiting episode which unfortunately could lead to an aspiration... It's a tight rope balancing act at all times it seems.

Good evening,

Maria, Whitney, Brendan and I returned from our five day stay in Boston, Massachusetts on Monday morning. We had a wonderful time and were able to reconnect somewhat even though we comprised only 80% of our family. We did alot of visiting with Guy and Sophie, site seeing, shopping, eating, sleeping and eating some more... ;-) I'm also happy to report that Tori did absolutely great during our absence and gave Grandpa and Grandma Schmanski ad Moira her nurse very, very little trouble. We had emergency plans prepared just in case and thankfully we didn't need to use them.

Tori only needed medication to ease her anxiety and agitation at times and that is nothing outside of her normal routine. Grandma and Grandpa were able to provide this for her as well as her daily care and feeding pump preparation while Moira came to the house twice per day to administer her daily doses of medication. We also had the video camera configured so we could watch Tori from my computer in Boston. We were able to determine what medication to give her at certain times to calm her agitation. Meredyth also came for Tori's ST sessions and Cari for her PT sessions while we were gone. All in all we don't think things could have gone any better!!! :-) We were able to relax a little more after the nervousness passed during our first couple of days and nights away. We did check in often though.

The Friday before we left Tori received her botox and phenol injections throughout her upper body and arms. By the the time we left Tuesday afternoon the botox had taken effect and Tori was a much more relaxed and not agitated person. We really couldn't have left her without her getting the injections. Now she can sit in her bed or wheelchair comfortably with her arms relaxed and laid across her lap. It's a marvelous thing even though it is such a simple task!!! If Tori ever gains immunity from botox we will be in big trouble...

Since we have been back Tori's demeanor has remained relatively calm and relaxed. Grandpa and Grandma headed south to the warmth of Mesquite, Nevada to take a well deserved break. Thank you both so much again for providing our family this opportunity!! We are now back into our 'normal' routine of caring for Tori and her siblings and doing our best to keep the household running. I'll also be meeting with Tori's school counselors next week to determine a learning plan for her. We'll see what we can come up with.