Tuesday through Sunday, June 26th through July 1st

Hello again,

On Wednesday morning Tori became ill once again with vomiting, a fever and I'm sure she was feeling quite miserable... She must have aspirated again as her blood oxygen level plummeted to 75%. So we have had her on oxygen again all during this week and it wasn't until today that her lungs were finally recovered enough to remove the assistance. She is now maintaining 90-95% once again. Tori seems to have a pattern of getting herself very agitated and 'worked into' being ill just prior to her having an appointment at the hospital. She has timed it just before several times now so we are being tight lipped around her in the this regard moving forward. Her next big date is July 10th when she heads to the Shriner's Hospital in SLC for tendon release surgery on her ankles and toes.

We didn't change her Thursday appointment for botox and phenol injections despite how she was feeling. Maria and Grandma tool her to the PCMC in SLC and spent the afternoon there with Tori since they have to medicate her prior to the injections then wait until she comes out of the anesthesia in the recovery room. Tori also had her baclofen pump refilled and reprogrammed to 'burst' mode which means she will get a larger dose of baclofen every 4 hours starting at midnight instead of the steady flow she was receiving beforehand. Her arms and upper body is already has much, much less tone and we'll be watching her closely trying to ascertain if the 'burst' mode on her pump is working any better. It may take a couple of months when the botox begins to fade before we will be able to tell anything. If she eventually builds an immunity to botox we will all be in big trouble...

Since her injections she has been sleeping very well during the night and is in good spirits during the day as well. She spends the afternoons in her wheelchair as normal and is outside on the deck when it becomes shaded in the backyard. The temperatures are now reaching 95-100 degrees outside so we are waiting until later before heading out. Tori, Brendan, my parents and I went to see the new Disney-Pixar movie "Ratatouille" today and all of us thoroughly enjoyed it. Tori remained awake, attentive and very aware throughout the show.

Koo, Chris and Gabriel have finally arrived back in the UK after spending 89 days in Beijing, China where Chris received Stem Cell Treatment and other therapies. I also found Shonia's site which contained a great link on general stem cell information and an equally informational twelve minute YouTube video that clearly explains stem cells and stem cell research. Please direct your thoughts and prayers to Jerrall, Krystal and especially Debbie Rich who has been weakening and in much discomfort lately. Jerall's love, strength, determination and devotion in fully caring for Debbie over the past four years has been greatly inspiring to my family and to many others.

Finally tonight, I dropped Maria and Whitney off at the airport early Saturday morning where they promptly departed for New York City. Whitney and her dance team are having ten days of competition and classes. Of course it was bittersweet as always because Tori used to attend all of these excursions as well and we typically brought the whole family and made a vacation out of the trips. Now Maria and I have to trade off taking the kids on vacations because one of us must and will always be with Tori. How we long for the days of old...

I'm also trying to get through all of the email sent to us lately so please be patient for our response.

Thank you all for the support once more,

Tim, Maria, Tori, Whitney and Brendan