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Hello everyone!!

Tori has compelled me to post a mid-day update today!! She FINALLY slept very relaxed in a nice and cool environment last night and it is paying off now. I just spent about four hours with her and she was totally aware and awake!! She is making up for the past few days by smiling so, so much today!! I am sooooo tempted to take a picture of that beautiful face and smile of hers for all of you to see!! Maria isn't very keen on that idea quite yet but perhaps if we wash Tori's hair and 'doll' her up a bit it might be ok ;-) We shall see.

Isn't it amazing that if you drop the temperature in the room from the low 80's to about 72 degrees that Tori's temperature follows?!?! Go figure... Tori went from 39 degrees Celsius to a cool 36.1 presently and she is very relaxed and comfortable and it shows greatly in her behavior and demeanor!! She has also been off the respirator for over four hours and her breathing rate has been between 15-20 and her O2 Blood Level is between 95-98%. She is doing absolutely great today!!

Two more positive notes. She hasn't really given us a hand grip on command but today it appears to me that she might be giving a slight 'fish hook' grip with the ends of her fingers on top of my finger or hand. I will continue to experiment with this throughout the day. I've also been playing a little 'hide and seek' with her to see how well she can locate me via my voice. She is pretty good at it!! It is exciting to see her eyes scan and focus around the room while trying to locate me. I am also typically rewarded with a smile when she finally locks onto to me so I'll play this game alot!! :-)

I'll post more later tonight!!

Thank you all!!

-Tim

Erika Kinetz wrote a second article for the New York Times about the competition in New York and the girls. It is entitled: Kicks, Cheers and Tears at a Dance Gala Finale and was published on July 13th.

You can read the entire article here: Kicks, Cheers and Tears at a Dance Gala Finale.

It is Whitney and I believe Skylar in the small picture on the left of the article.

Whitney, welcome home and congratulations on your great performance these past ten days. Oh! on our drive back from seeing Tori at the PCMC, Whitney, Sophie and I passed another car with a "Pray for Tori" sign on its back window (it was a Ford SUV if not mistaken).

Love,
-Guy

PS: The New York Times was kind enough to give re-production rights for the text of the article. I will arrange to get the article posted here as soon as I understand what is required of us.

The air conditioning problems at the hospital are continuing to cause problems!! Tori's room was warm to hot (75 to 80+ degrees) all day again and I finally resorted to making them at least get Tori a fan tonight before I left the hospital at 10:45pm. As Guy pointed out in his mid-day update, the 4th floor AC was totally off for a while today and that is the infants section!! There are ALOT of upset and angry parents patrolling the hallways lately at the hospital and their frustrations are totally justified. It is still beyond belief that they are having so many power outages and AC issues...

Maria is actually going to spend the night at the hospital with Tori to make sure she stays cool. Her temperatures today ranged from 37 to 39 degrees Celsius (37.0 degrees Celsius is equal to 98.6 degrees Fahrenheit or normal body temperature). Tori was a little bit more responsive today but she is obviously still very uncomfortable with her mild fever and the room temperatures. She is almost lethargic in her actions and Tylenol is continually administered to her throughout the day. She did breathe without the respirator for four hours today and she did great with all things considered!! Her blood oxygen remained at 94-96% throughout the trial and her respiratory rate ranged from 25-35 breaths per minute which is very good as well. They placed her back on the respirator after the four hours and they are now on a four hours on and six hours off cycle.

Tori continues to cough every now and then but it is not continuous coughing like the previous days. Only Two to four strong coughs and she is done. She also seems to be getting more accustomed to the coughing as she rarely gets upset anymore.

That is pretty much it for today. Hopefully with a cool night's sleep and a cooler room tomorrow we can get more response and awareness out of Tori. We really need to see Tori in a pleasant and comfortable mood again...

Thanks,

-Tim

hey everybody, we just got back from new york city today from dance nationls. they went really good. we got 2nd and 3rd and some other awards then we got into the galla with no strings. we didnt end up winning the galla but it was so cool to get into it. jrs won criticts choice in the galla though. that was awesome. and ali holker won sr outstanding dancer. so i thought we did really good. we missed tori so much though. it was relaly hard. but everytime we went on stage we said a prayer for tori. everytime we were out there all our strengh was for her. we all love ya so dang much. we have a couple suprizes for ya tori. haha dont worry you didnt miss to much about travis. he cut his hair off. hes still amazing but nothing like he used to be. we acutally talked to him this time to. me and kourtney and kenz got a picture with him for ya. kirra had to take us up to him and ask him cause we were too scared. you werent there to do that so we had to go to kirra. haha kinda lame. but he also signed ya something.we all thought that would make your day. well we all miss you so much. you need to come back. your doing so good. i have so much faith in you. i love you so much.

Tim offered a quick update via phone today and we wanted to share it with everyone.

Tori has been pretty quiet today again. She is suffering from the heat in the hospital. The A/C went out again today. According to what Tim said, the entire 4th floor is out of cool air. Everyone is pretty frustrated by the fact that patients' safety is jeopardized by power outages and A/C...

She has coughed a couple of times this morning but seems more comfortable from that perspective. She has been off the respirator and just using the mask since 10:30am this morning and still going.

It is comforting to see that she is able to keep her stats up off the respirator. Her heartrate is around 90, O2/Sat at around 94 and respiratory rate around 30.

That's it for now. Tim is hoping that Tori is going to wake up when Whitney and Maria get in tonight. He will let you all know.

Love,
-Guy

Guy and I have now decided that each time a doctor or nurse asks "Are you studying in medicine?" we will reply "Yes we are and we have been attending Google.com University now for more than 22 days!!" :-) We've also been in the PICU for that length of time of course and you actually learn quite a bit while being in there. It is somewhat entertaining at times to ask and present very tough questions to Tori's attendants and witness them sometimes heading to the internet themselves to look up the answer. No, No - We aren't just teasing them as all of the questions DO indeed directly relate to Tori. So we really don't mind asking them at all. I will try and include the technical references in my updates for all for you to do your own Google.com research if desired ;-)

At 3:00am or so Monday morning Tori began to display some symptoms of the Thalamic Storms I mentioned in yesterdays update. Her fever returned, she began sweating profusely and her arms and legs tensed up occasionally and shook for about 3 hours. She even threw up at one point during the morning. This episode completely wore her out for today so we opted to let her rest the entire day. The ventilator was left on her and she more or less slept all day. She had a nice, low heart rate and excellent blood oxygen levels and she was completely relaxed. She had a slightly raised temperature throughout the day and there wasn't much interaction with her other than the seldom and slight eye openings from Tori at times. Doses of Lorazepam also began today which are supposed to suppress the supposed Thalamic Storms.

The doctors also feel the Keppra will not be completely out of her system until tomorrow afternoon even though we quit giving her any doses early yesterday. They are continuing to give her Valproate which reduces the Myoclonic seizures like Keppra. This is the drug they will reduce next if Tori does not exhibit any Myoclonic seizures during the next couple of days.

Tori also received a new Trach today and she actually coughed up a mucus storm which sprayed the Trach doctor when he was installing it!! The doctor took it good though claiming "It's just an expected part of the job for me..." All in a day's work I guess. All in all today, Tori rarely coughed or had to be suctioned but she DOES have a verified pneumonia in her lower left lung. It was caught very early and she was placed on an Antibiotic immediately. Sorry, but I didn't catch the exact one she was given...

I cannot believe it but today marks Tori's third week of staying in the PICU (Pediatric Intensive Care Unit) at Primary Childrens Hospital. I can distinctly remember speaking with several families during our first couple of days there who had already been in the PICU for three or four weeks and I thought to myself 'That is unimaginable?!? How in the world are they handling it so well?!?' Now here we are and Tori and the rest of us are probably the most senior 'veterans' of the PICU. Unfortunately, and most definitely, it is NOT a label or title that is wanted by anyone... We have met so many wonderful, loving and caring people during our stay in the PICU and we have also seen, experienced and learned so much about life and the challenges it presents. To put it very bluntly, there are many children who do not make it out of the PICU... I honestly wish that everyone could spend ONE DAY in the PICU to realize how fortunate they are. I truly believe the experience of just being there for that day would be life altering for everyone.

Unfortunately for us, Tori's day was not nearly as pleasant as yesterday. She had a continuous fever throughout the day and it reached a temperature of 39 degrees Celsius or 102 degrees Fahrenheit. The air conditioning has also been very poor in Tori's current room and the temperatures hovered close to 80 degrees or more inside. We have been battling this for a couple of days now and we are demanding that it will be fixed tonight or we are moving rooms!! Tori also had her respirator removed very early in the morning so her breathing was already very hard when we arrived today and her blood oxygen level ws low as well. Tori was sweating badly and it was very evident she was uncomfortable and restless throughout the day as well. No smiles to speak of today... Only an anguished face and tears... She continues to have a lot of mucus in her lungs and she either coughs it out or gets it sucked out and she likes neither of those options. Tori also seems to realize that there is painful area in her neck where the Trach is. She now has the power in her arms to swing them up to her neck and at times she has actually hit and knocked off the ventilator... This is something new that we must be very aware of and watch for.

I see that Tim already beat me to reporting what I saw yesterday. But I felt like it was important to mention here so that there would be more than one witness that what Tim has been saying is correct.

The Schmanski's lived next door to us in Lindon for the past three years. They were the greatest neighbors we could ever hope for. My wife, Ann, and I have visited Tori, Tim and Maria a few times at the hospital now. We've been in to see and talk to Tori twice. The first time was June 26 and then yesterday. Both Ann and I were amazed at how great Tori looks and in our eyes she has made a lot of progress.

At one point in our visit, Maria started joking about all of Tori's text messaging which resulted in an $80 bill. This produced on Tori's face a full blown, both sides of the mouth, can see her beautiful white teeth -smile! I realized then that Tori hadn't been outside hanging out with the old people in the neighborhood because she was inside chatting or text messaging with her friends! Back to the smile...it looked to me like I could see her attempting to laugh. Prior to that she had smiled a few times, but those were kind of limited to one side of her face. Those had come from talk of her grades and things like that. At that big smile, Ann said "Oh my heck! There's Tori!" You can tell my wife has been in Utah too long.

We have no doubt she is aware of what is going on. She recognizes people and reacts differently to different people. It was her mom that she smiled so beautifully for yesterday. And we were lucky enough to be there.

And your journey continues! Even more wonderful news from you. I'm watching for entries from the "site enhancers". It's beautiful. When Tori reads this she will love it. I'm thrilled and over-joyed that you have found a facility that is close to home / work, one that YOU like and that is affiliated with hospitals. It is a very good choice. Take it easy and I am looking to see if I can find a website for that pastry shop! All our love, Auntie Jill and Uncle Donny. P.S. Please do let us know Tori's new address when she moves - I have promised deluging her with cards and notes and want to keep them coming!

Hello all,

Tori had a day filled with stimuli and activity primarily because she had 15-20 visitors today to which she responded very well. She was awake again for most of the day and she also served up the most smiles we have seen to numerous people. She even threw one out to a doctor who was checking her belly with her hands!! So it is NOT just Maria, Guy and I who have personally seen the smiles now!! Some of the timing regarding her smiling is also intriguing as it appears that Tori has not lost her sense of humor. At one point today Guy and Maria threw a 'short man' type joke my way and Tori responded with smile. I personally didn't think it was too funny and I'm not that short but oh well... ;-) Later, as the frenchman Guy was speaking in his native tongue to her I told Tori to tell him to quit speaking spanish to her which drew another nice big smile. Now this next one is the real topper!! The biggest Tori smile or even grin drawn today was immediately after Maria began complaining about Tori's $80 text messaging bill!! She really seemed to enjoy that one!! :-) We are always asking ourselves whether this behavior is purely coincidental but that theory is very hard to believe when the behavior is witnessed live in person. The timing is absolutely right on cue.

Tori did have a 30 minute span today where she coughed and coughed to get all of the mucus from her lungs. It completely wore her out and she had to be placed back on the respirator for a while to get her blood oxygen level back up. She also had a very long and nice nap afterward and the coughing episodes after her nap were not nearly as extreme as the ones earlier in the day.

As Guy mentioned in his mid-day update, we toured the UVRMC Inpatient Rehab Center again today and it is definitely now our top choice for Tori. We met with several of the nurses and respiratory technicians and they all seemed very nice, knowledgeable and interested in Tori. We will begin pursuing the next set of steps necessary to get her there on Monday.