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HAPPY BIRTHDAY, Tori! We love and miss you so much!

Bon Anniversaire ToRi!!
Wel love u and we would love to be with you today...
We miss you

On t'aime,

Sophie, July et Guy

Tim, Maria - I seem to recall somewhere in all of these entries that a reference was made to how difficult it was to get Tori to "go to bed" because she needed to communicate with her friends and family. Seems to me she is exhibiting those same familiar habits and hopefully this is a good sign. Thank you so much for the beautiful photo of Tori. Your updates are so very valuable to all of your family so far away in the Midwest. My heartfelt thanks to you. God Bless and rest well. All our love Auntie Jill and Uncle Donny -- Love to Paul and Sandy, Whitney and Brendan.

Dear Tori - I am so grateful that I have this opportunity to wish you a happy birthday. Now your birthday is with me and I will do my very best to remember it every year from now on. Happy Birthday Tori and Best Wishes. Feel better and rest well. All our love Great Auntie Jill and Great Uncle Donny

It has been a couple days since the very emotional Dance Attack final ceremony in Park City and this has given Maria and I some time to recollect on the night and compile our thoughts. Words alone cannot express our gratitude towards everyone who attended the event. Tori is truly blessed to have the amount of love, prayers and support she is receiving and we are so blessed as well. Thank you everyone for making this event so special for our family. We will remember it forever.

We would also like to especially thank Sheryl and Chris Dowling from The Dance Club, Connie Sallomanno from The Winner School of Dance and Kandee Allen from Dance Impressions for being so caring and generous in devoting this event to Tori.

Additional thank you's go to the awesome dance instructors Jacki Ford, Jason Parsons, Andy Blankenbuehler, and soon to be Eddie and Heather Barcello. They are all amazing and truly talented people who also donated much of their time at the event to Tori.

More thank you's for the Dance Club employees Michelle Galbraith, April Snow, Bethany Bayles, Allison Thornton, Lisa Stoddard, Michelle Robey, Emily Hoover and Emilee Wright. They were all instrumental in running the Dance Attack event flawlessly.

And finally, a truly heartfelt thank you to dance moms Marilyn Hess, Michelle Boyack, Heidi Sobieski and all of the Dance Club girls!! You have done everything you possibly can for Tori and her family and we love all of you soooo much!!

Sincerely,

Tim, Maria, Tori, Whitney and Brendan

Tori,

We love you so much and will always be here for you!! We will fight for you forever girl!!

You are always in our hearts and minds.

Love,

Dad, Mom, Whitney and Brendan

Hello everyone,

Tori decided to try for her 'staying awake' record during late Sunday night and today... Tori ended up not sleeping at all throughout Sunday night which meant I didn't sleep much either. She truly seems to have super hero strength if she does not want to sleep. We tried just about everything we could during the day - 5 doses or more of Valium, additional doses of Zanaflex, Tylenol, Bennedryl, Motrin and even the newly added Keppra. During the night she was more agitated because the Phlegm I mentioned earlier is getting thicker and stickier so it does not come out of her Trach very easily. In fact when she coughs it bypasses the Trach and enters her mouth which intiates her to swallow it... The Respitory Technicians had a heck of a time getting a culture because of this and the culture they eventually got on Saturday still shows negative for any bacteria. So they will continue to monitor this and actually 'Bag' Tori when they need to deep suction her lungs.

So Tori finally went to sleep around 3:00pm today which gave her a total time of 31 hours straight of being awake. She didn't beat the record which is I believe 38 hours straight... She slept until 6:00pm then woke up again until 8:30pm and is now still sleeping as I am typing this update. I do have to state that while Tori is up during the day she isn't necessarily very agitated. She is very sedated so her eyes can barely open but she is definitely still up and can see and hear. It's kind of strange and it seems like she just doesn't want to miss anything or something like that...

In regards to Tori's digestive system, Tori did vomit slightly during Sunday night. We didn't even notice it until the morning when we checked under her and noticed traces. It basically came out of her Trach and ran down her neck. There wasn't a severe vomiting episode like in the past. We quickly stopped the feed and drained her stomach contents from her G-Tube which showed about 300 milliliters of Bile. There wasn't any of her feed in it so it appears the NJ Tube is still working correctly and placing the feeds into her small intestine. So we are kind of stumped as to where the vomit came from... We then restarted the feeds and continued to vent Tori's stomach through the G-Tube. She did well throughout the day as we upped the feed all the way to our goal of 75 milliliters per hour and she remains there at this time. We are really hoping and praying for Tori to handle the feeds because her weight is now approximately 94lbs which is not good at all... She has lost close to 23lbs since her injury. She did have another bowel movement this morning so yet another positive sign her digestive system is recovering.

The physical therapists also ran Tori through her routine and her legs and arms are still doing well with muscle tone and spasticity. The Botox in her arms has worked especially well and we can now move them in almost any direction with much less resistance from Tori as in the past.

Tori's Valproate (Valproic Acid) level was 80.6 today so we started the Keppra. The list of Tori's various medications now stands at 16. 11 of those are consistently given and 5 are as needed. Again, the goal is to trim this list once the Keppra effects are known.

Maria and I have a meeting scheduled for Wednesday at 1:00pm with Tori's medical doctors, therapy doctors and neurologists. We will discuss Tori's current condition and prognosis and try to decide on the details for her next direction.

Well, I believe that is it for today.

Thank you all so much for your support!! As I began typing this update there were 139 total users on the site which is truly incredible and the numbers just continue to grow. I hope these updates are beneficial to everyone and again, I will strictly provide the facts around Tori's condition and progress and I never intend to 'sugar coat' them at all.

Thanks again and good night,

-Tim

Hi from Minnesota. I am anxiously awaiting my bracelets from Janine. On Sunday, I thought I saw one on a driver's left wrist but since we were driving on the freeway, could not confirm the sighting. I know Tori will be feeling better; she wont' give up. You all are the strongest people I have ever known. Anyone who reads this site will be inspired to hang in there and keep going just like the Pink Energizer bunny (hope that isn't a trademark that I have not legally recognized!). All my love to you. Thoughts all day and prayers every day. Auntie Jill and Uncle Donny. PS Tim - don't give up the thought of a medical career; you would be good at it!

Tori woke up today in good mood after her fairly decent night of sleep. She was given another 'Day at the Spa' treatment by Maria which includes a warm sponge bath, shaving, shampoo and massage and fingernail polish. That put her in a great state for the rest of the day.

In my meeting with Dr. Such-Neibar, one of Tori's therapy and rehabilitation doctors, we dicussed adding Keppra back into Tori's medications once her Valproate (Valproic Acid) levels are between 80-100. When we took Tori off of Keppra originally she seemed to become much more awake and aware so we thought there was a drowsiness downside to the drug. Apparantly this is unfounded so we are going to try it again and reduce the Baclofen if there are positive results. We also discussed Piracetam which is a relatively new drug here in the states though it has been widely used in Europe and Canada. The therapy and rehabilitation doctors here have NO experience with it because it is so new here. We will see how the Keppra path goes but it might be time for some Piracetam experience if all of the positive information I have researched is true.

Tori finally bit down on her lip a bit too hard today and opened a cut or two. She was highly agitated and we didn't want her to do it again so I placed a rolled up piece of cotton between her teeth and lower lip. Bad idea... She eventually freed it and we were lucky enough to get a plastic syringe between her teeth so I could use tweazers to retrieve the cotton. Just before she swallowed it of course... So we tried a bite block next which worked for while until she learned if she opened her mouth real wide it could be freed... Taping it to her cheek was the next idea which failed as well becasue the bite block eventually slipped and Tori cut up her tongue a bit... So we just ended up taking it out and tried to let Tori deal with it and deal with it she did. She learned how to use her tongue to push her lower lip out before clamping her teeth together. Now the real cool part about this is when I ask her to use her tongue on her lip she does it!! She did this 4 times in a row for me. Now if I can just get her to interact in a more positive setting than a cut up mouth... Another positive with this experience is that Tori CAN definitely gag!! She demonstrated it several times during the retrieval process.

Dance Attack was so much fun. The girls were able to raise a lot of money through donations and the raffle/action that was held. Marilyn will have to let you know the total amount raised. But the feeling up there with all of the girls was incredible. More people than you know have been touched by Tori, and her story. Girls not even from The Dance Club were walking around wearing there Pray4Tori shirts and bracelets. While I was there I had about a dozen people ask me about Tori, from seeing it written on my car. Having both Tim and Maria at closing ceremonies was great. I had a lot of people not from our studio comment on your strength.You are an inspiration. Tori keep fighting hopefully we will be able to see you at an upcoming Dance Attack!
-Emily Hoover