Tuesday December 16th, 2008 through Monday, February 16th, 2009

Hello again,

Back to the premise that no news means all is steady. Ok, that is bad excuse for not having more frequent updates I know... I will try harder on this front. Our family and Tori had a nice holiday season and spent Christmas Eve with the entire family in our home. I had two weeks off for the most part and was able to unwind with the rest of our family and prepare for the upcoming year which will involve additional surgeries and procedures for Tori. We have opted to stall on any of them due to RSV season... The winter months are just not optimal for anyone to be be in a hospital for a extended period of time and especially for those in Tori's condition where infections of any sort can potentially be life threatening. So we will attempt to schedule any and all procedures for around mid-year.

We are contemplating spinal fusion surgery for Tori along with Combined Ventral and Dorsal Rhizotomies which must be done before the spinal fusion surgery so we need to schedule an appointment with the medical experts at PCMC before deciding. It is a relatively new procedure with limited clinical results but in personally reading those they do sound promising and would help with Tori's extreme dystonia. Several of the case study patients were able to have their baclofen pumps eventually removed after this surgery. The combination of both surgeries might mean up to a month of hospital time if both go as planned... We aren't very excited about that aspect. Tori is also scheduled for her next round of botox and phenol injections this week.

I am happy to report that Tori's various therapies are going better than they ever have before and that success can be attributed to a very simple thumb switch. The switch Tori utilizes consists of a string attached to her right thumb. Tori simply has to lift her thumb to engage the switch which can make a selection on the computer. She is now using this device in all of her therapy sessions which includes 3 visits per week from Jake or other Timpanogos High School assistants and one visit from Meredyth. I believe the consistency is paying off as she has grown accustomed to making her selections with the switch. Whether it is designing fashions, making a pizza or choosing movies or songs - Tori always has a choice in the matter. I am also trying to schedule another evaluation with the assistive device manufacturer DynaVox. They have a new new gazing solution we would like to try with Tori.

Tori also has a new Facebook site that is shared with her daily. She enjoys the computer just as she always has and reviewing all of of her friends highlights on Facebook has opened her up to yet another method of interaction. If you wish to become her friend simply add her and I will approve as necessary. This will provide a much more effective interface for those wishing to leave her a note. It is so unfortunate that the Pray4Tori site has become a target for SPAM as so many, many other similar sites have as well.... I literally have 5-10 account requests per day that are purely SPAM requests... I can't even keep up with legitimate requests for an account either due to all of it. I just don't have the time to sift through them all.

Tori's physical therapy has been renewed for 2009 so she should receive sessions twice per week for the year. Getting Tori the services she needs and deserves seems to get more and more challenging every year as insurance companies are now attempting to exclude her from those said services... It is a never ending battle and requires so much time and energy BUT if you don't FIGHT FOR WHAT IS RIGHT you will lose... WE are Tori's advocates now and will fight tooth and nail for everything she truly deserves and to provide her the best possible quality of life attainable. We WILL NEVER GIVE UP in trying to help her in that quest.

Thank you for checking in on Tori and our family and please feel free to send a Facebook friend request to Tori.

The Schmanski Family
Tim, Maria, Tori, Whitney and Brendan