Friday, July 8th - Day 19 update

Hi again,

Tori seemed to spend more time today resting when compared to yesterdays activities. When she is awake she continues to be aware and responsive of sights and sounds. We have also noticed that she is raising her arms much more lately and resting them on her chest. Her reaction to the decreased Keppra has been very good and the doctors would like to decrease it to zero if she continues to respond well over the next wo days. The zero amount of Keppra step does make us a bit nervous... If she can avoid the Myoclonic seizures with no Keppra administered they will look to decrease the Depacone next. Tori also spent 6 hours or so breathing on her own and her cough is very, very strong!! She does have to be suctioned frequently as her lungs are filled with mucus right now. That is actually a GOOD thing because it shows her body is fighting off the bad stuff in her lungs. Maria and I have been doing alot of the suction ourselves. Tori still doesn't like it too much though... We believe her throat is still very sore from having the ventilation tube in her mouth for so long.

Tori had many visitors today including Mike, Tina, Russel, Ashton, Melanie, Brandon, Deanna, Mark, Julie, Shaid, Grandpa and Grandma Schmanski and I think that was it.

I spent my morning today near home visiting and touring about 7 health care facilites and the Utah Valley Regional Medical Center (UVRMC) Physical Therapy and Rehabilitation Center. Maria and I also visited the Health South Hosptial in Sandy Utah which is about 30 minutes away. I have found that Rehab Centers which are tied to a hospital are cleaner and provide a more 'professional atmosphere' than the private Rehab Centers. Having actual doctors and some serious medical equipment nearby is also more easing in our minds. This is only my opinion and it's based on everything I've seen to this point. Maria and I will probably decide on one of those two hosptials after we visit the UVRMC again tomorrow. It is about 10-15 minutes away from our home and that alone would be soooo great!! :-)

This move to a hospital is also to be considered as temporary until we get ourselves trained and more comfortable in caring for Tori. Having Tori completely stable and accustomed to more intense therapy prior to moving is also a priority. Our house will also need some additional configuration to support her. Tori needs to be more 'acute' to be returned to the Primary Childrens Hospital Rehabalitation Center which is considered to be the very best in the west. To be in an acute status, Tori must be able to do at least 3 hours of strenuous therapy a day and she is definitely not at this stage yet. So we will work her as much as possible to get her there!! Of course we will have to keep that Patience, Patience, Patience principle in mind as we move forward... That part is very hard to deal with...

Thank you all and good night!! Wait?!?! It's only 9:50pm - that's a new early time to bed record for me during the last three weeks!! Believe me, I will enjoy every second of the extra sleep time tonight :-)

Until tomorrow,
-Tim