Friday, Saturday, Sunday and Monday - December 29th Through January 1st

Hello and Happy New Year to all!!

Well the holidays are finally wrapping up down and we all could probably use a holiday from the holidays as well. Tori didn't get sick after all and has been doing pretty well. She has also had numerous visitors throughout the past four days. She spent much of her time in her wheelchair amongst the family in the kitchen and family room of the house. She has had two mild 'startle seizures' though and we're not sure on if there is anything else we can do for them as she is already on Keppra and Depakene which are core medications in preventing them. I found some information on Startle Epilepsy but don't believe that is what Tori has. It is more likely Hyperekplexia caused by the injury to her brainstem. We will continue to do our best NOT to startle her I guess.

Tori will have her baclofen pump refilled on Thursday and she will also have her next round of botox injections and she is certainly due for them. Tori's muscle tone and tightness continues to grow worse as the botox eventually wears off. Having this done prior to the trip to China is absolutely necessary and given the seizure and other challenges from the last injection, they are going to put her under anesthesia this time. The last botox injections were a little rough on everyone from Grandma Schmanski, Maria and the doctors and nurses doing the injections...

Tori's passport still isn't in hand but as far I am told there are no issues and it SHOULD be processed by Wednesday or Thursday of this week. Then we'll pay for the expedited within 24 hour visas. We will all just feel MUCH better when this is finalized and the needed passports and visas are in hand...

We hope and pray that the new year brings more miracles and continued progress for Tori as well as strength for all of us helping in and supporting her journey. While her progression has been painfully slow lately our love, devotion and dedication to her always remains. Our hopes are high on the China trip and the stem cell injections Tori will receive. A breakthrough in her progress would certainly be welcomed. Michael's trip is almost complete and I found these two updates (One and Two) on the Deering sisters who arrived in China in early December. After reading those promising articles I was brought back down to earth somewhat after reading another one about America's continued loss of ground in stem cell research ... "The United States also possesses something other countries cannot buy or steal: the breadth and depth of its scientific prowess." Absolutely agree!! So let's get off our moral high ground, get moving and start using this prowess!! This fantastic article from the United Kingdom is right on - "When George Bush banned funding he effectively put researchers into quarantine"... Thankfully there still is SOME privately funded stem cell research going on here at home at prestigious schools like Harvard.

In closing tonight and for the past year, we are truly blessed, humbled and grateful for all of the love, prayers, thoughts and support directed towards Tori and our family. Whether from friends, family, the community or from complete strangers, it DOES have an impact on ALL of us. I'm often still pleasantly surprised and sometimes moved when a stranger recognizes me, approaches and declares "I Pray 4 Tori every day". Please, please never stop doing that!! That includes the prayers as well as the approach and comments. This gives us strength and helps keep us all going as we encounter feelings of happiness and hope along with sadness and despair each and every day... It is very hard to not long for how it once was and most often this brings only pain and sorrow. Focusing our thoughts on Tori now, her healing and her recovery is much more productive and where our thoughts need to be. Each day is a gift.

Sincerely,

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