Wednesday through Monday, June 20th through 25th

Good evening,

The past several weeks have been emotionally difficult for myself and my family but we have had more heartfelt and kind response via email, telephone and verbally than is imaginable. I've had strangers approach who actually know me from the site though I don't personally know them and offer their condolences, support and tell me of the impact my family has had on their lives. Thank you all so much!! I've also had numerous new emails from other families with similar situations, difficulties and feelings as well. Before our unfortunate introduction into our situation I never even really knew they existed but I should have known regardless.

Tori is actually doing quite well lately as she has been sleeping comfortably throughout the night, has been rarely agitated and normally has a calm and even temperament. Caring for her while she is in this state is so much easier than if she is completely agitated and fighting you every step of the way... She has been enjoying her evenings outside on the deck and we even took her shopping again to Costco and Target yesterday. She is very tight once again in her upper extremities. I guess she is never 'loose' per say but you can definitely tell when more botox and phenol injections are needed and that time is now. Tori will be getting more injections this Thursday morning up at the PCMC in SLC. She is also due for a baclofen pump refill and possible adjustment to 'burst' mode but I am unsure if that is on our agenda for this trip.

Tori continues to eat small amounts of food but we haven't been able to increase the amounts as fast as we have wanted. We won't stop working on this of course. For the first time ever, Tori actually blew off a tissue placed over her face completely voluntary and on her own. We have been trying this for over a year and she finally did it!!! Meredyth placed a tissue over Tori's face and instructed her to take a deep breath and blow it off and low and behold she did it. She is even blowing through a straw somewhat if she can lock her lips around it. Blowing and sucking through a straw remain a couple of our top goals for Tori. And so the work continues.

As you all know by now, George Bush has unfortunately vetoed once again federal funding for embryonic stem cell research. It continues to be very frustrating that Congress is listening to the consistent majority of the American people and acting on it while George is stubbornly ignoring the desires of millions for this research to be funded. I thought this editorial in the Salt Lake Tribune had an interesting and accurate perspective. Everyday there are dozens of positive articles on stem cell research and advancement. For those who want to get all of the latest on stem cell research here is a tip. I get 10 to 50 articles a day on stem cells because I use Google Alerts. I highly recommend getting a free Google email account and subscribing to a Google Alert called 'Stem Cells' or Stem Cell Research'. You will get all relevant information delivered right to your email account. It is very convenient and you can read the articles when desired.

Thank you for the continued love, prayers and support,

The Schmanski's

Tim, Maria, Tori, Whitney and Brendan