Friday through Wednesday, June 8th through 13th

Good evening,

There are not too many positive aspects to report on for this update. Tori became ill last Thursday and she vomited during most of the afternoon and evening. Her temperature reached 103 degrees and she hardly slept that night. Her blood oxygen level also dropped into the high 70's range so we had to provide oxygen assistance of 5 liters to help her maintain low 90's readings. The next day her temperature and temperament were back to normal but she has remained on oxygen until now. She had similar bouts with a high temperature over the weekend and she seems to bring it upon herself during highly agitated periods. Then it takes a full day and alot of medications to get her calmed once more... We've been slowly weaning her off of oxygen again and she was down to 1 liter last night which maintained mid 90's on her blood oxygen level.

Tori hasn't been sleeping very well at all which means she also needs alot of attention at night unfortunately... Caring for her effectively when she isn't sleeping is a huge challenge for Maria and I because after a few nights of doing it we become exhausted and have to then heavily medicate Tori so we can attempt to rest as well. It is not the desired solution or pattern that we want but that is the only option we really have...

Last Thursday Tori had an appointment at the PCMC (Primary Children's Medical Center) in SLC which we had to cancel since she became ill. We have since cancelled a rescheduled appointment as well since she is on assisted oxygen and still not feeling up to par for a trip. We are now targeting early next week for the appointment in which we will refill her baclofen pump and try the 'burst' mode of the pump as well. Tori is extremely tight in her muscles once again and it is making her very uncomfortable with higher levels of agitation as well. We must either get the baclofen pump working to alleviate some of the tightness or begin to explore other options. She is also almost due for more botox shots which will only provide temporary relief.

There has been some great news recently on the stem cell research front that I hope everyone has seen in the media or elsewhere. If they can really create embryonic 'like' stem cells outside of utilizing embryos it will greatly advance the efforts. The sooner we can determine effective and safe ways to help people with stem cells the better for everyone of course. In the near future, some member of ANYONE'S family will benefit from some type of stem cell related treatment so there is a vested interest for ALL of us. Even with all of the promising new stem cell news and the fact that congress has passed a bill allowing for federal support for ALL types of stem research, George Bush will once again veto this bill here shortly. So we will drop even further behind the industrialized world in stem cell research and not utilize and leverage the vast amount of talent and resources available here in efforts to benefit the entire world. It continues to deeply sadden and at the same time disgust me...

Thank you all as always and that is all for tonight from NYC,

-Tim