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Well I have never actually met tori, much less any of her best friends, but i want you all to know that you are all very pretty and it makes me jealous but any way thats besides the point, i actually saw someones name on msn that said pray for tori and i asked what had happened and it touched me so much because if i thought about one of my best friends going through this i would want to do everything icould so i just started to pray for her, and i guess i feel retarded cuz you guys all know her and idont, but i guess i just want to say that my heart is with you guys and i am praying for you all.

What a difference a day can make... Saturday started great as I mentioned in my morning update but as the day progressed she had some trouble as Guy portrayed in his mid-day update. I also spent the night in Tori's room again.

All I can say is the doctors and neurologists here are going to have to nail down the exact drugs she needs before she leaves this place. And I expect to see her calm and without any of the Myoclonus activity for at least two or three days straight before we go. I can't imagine what it would have been like if she had this happen in a health care center where there are no permanent doctors on call... It CANNOT HAPPEN at a place like that!!

Tori is so very, very physically strong. Maria, Grandpa Schmanski and I did our very best to prevent her from hurting herself and us during her extreme episode yesterday afternoon. She ws pulling her entire body up just by her arms in our hands. She was also very angry and her face turned beet red and she was sweating profusely. She fought like this for a FULL two hours before they pumped enough drugs into her to get her to sleep. She basically ran a marathon during the afternoon...

We can also now tell exactly when the Myoclonus is setting in. The tremors in her feet typically start at 3-5 minutes apart and eventually get to 1-5 seconds apart in 30 minutes or so. At that point she is very much in pain and uncomfortable... If the drugs are initiated at the onset as I would like the episode would be not near as bad but there are delays unfortunately in getting the drugs quickly which is frustrating. I don't wait a second anymore in finding a doctor as soon as I see the initial signs of an episode. Then there are the drugs!! What didn't they give her yesterday... Lot's of Ativan, Haldol, Benadryl, Melatonin and more Clonidine. The standard Valproate was given as well. Again, the right combination needs to be found very soon to prevent episodes like this all together. The Ritalin factor in all of this was the main issue and it without question will not be given to her for a while...

umm this doesnt really apply to me cause i dont really know tori but i wrote it for a friend a day or two after it happened its a poem.

Our friendship
I can’t explain
You’re going to a place
On heavens lane

Your loss
Is hard to witness
But where you’re headed
All is bliss

But maybe now
Is just you’re time
At least I know
You’re in a place sublime

Where angels dance
And lords sing glory
I wont forget you
I love you Tori

Since Tim's post earlier today - a lot happened.

First, let me start with the positive: Maria gave Tori a bath and brushed her teeth. She was pretty and all ready for guests. And guests she received. Marilyn and Kenzie came up to see her.

I believe that Maria and Tim both said they had not seen their daughter that alert since her accident. These were ear-to-ear smiles that Kenzie and Tori were sending at each others. You can tell there is chemistry between them and that includes Kenzie's mom Marilyn. Update: I forgot to mention something. No one else noticied it but I guarantee you: I saw Tori wave back at Kenzie when she was moving her hand in front of her. Of course, Tori's response time is lagging sometimes - but in this case there was response and it was great to see!

It appears obvious that Tori is thirsty for friends right now.

A few more visitors came to see Tori. For the first time, she got to see her website as well. Kenzie and Tim used a laptop to show her some of the pictures and posts on the web.

At 13:20, they gave her a stimulant (Ritalin) to see how she would respond to it. Well it didn't take very long for it to crowd her room. Let's put it simply: she didn't respond well at all. She got over-stimulated and it looked a lot like what she did last night but amplified. She would not stop shaking with Maria, grand pa and Tim by her side. Everyone got a little frustrated I think and it's very understandable.

They didn't attribute her reaction to the drug but it is very likely. They decided to give her benadryl to help her calm down (yeah, right...). That wasn't enough and Tim asked that they consider sedation (kinda whispered in his ear). Her heart rate was at 165 and they could not even get her blood pressure. They had to sedate her twice with adult narcotics. After 20 minutes, the drugs finally kicked in and she was able to relax. Her heart rate is back down and so is her blood pressure (expected). Maria is up there with Tori now and I hope that the 2 of them can rest a little bit.

Tori actually slept solidly from 10:00pm last night until 9:30am this morning!! She hardly even noticed as they repositioned her throughout the night. She is awake, alert and feeling comfortable again this morning.

The Clonidine and Clonidine patch seem to be working as we have NOT seen any of the Myoclonus activity. They have also decided to give Tori a dose of Ritalin today at noon. I will be watching her very closely this afternoon.

When the Physical Therapist came in this morning and told Tori to move her fingers and hand she actually did it!! She definitely seems to understand commands at times and can act on them and I have seen this in other instances. Of course when she tried to have her do it again Tori wouldn't... That stubborn old Tori was showing up again!! ;-)

That is all for now!!

-Tim

I am typing tonights update within the hospital as it is my turn for a sleep over with Tori. Tori is currently in one of the few rooms with a couch to sleep on so it is not that bad.

Tori flat out struggled to go to sleep today as my early morning update and afternoon update indicated. At about 4:00pm or so we started to see some symptoms why. Tori would wince with discomfort and pain about every 5-10 minutes and we couldn't figure it out. She would tighten her arms and hands and bring them to her chest each time while her face grimaced in pain. Between 6:00pm and 9:00pm the intervals were more like 1-3 minutes and we finally began to notice the stiffening and shaking in her feet and legs. She was just hurting real bad during the episodes and we believe it is Myoclonus related again. The Keppra is surely out of her system at this point so the doctors gave her some Clonidine and a Clonidine patch as well. She also recieved some sleep inducers because she has been awake for over 40 hours an is totally exhausted. She finally went to sleep at 10:00pm tonight. I will be sleeping beside her tonight and will be monitoring her closely.

There were plenty of good things today as I noted in the earlier updates. Tori did go a full 10 hours off the respirator and did awesome!!

Outside of that, Maria and I visited the Health South Hospital in Sandy again and have initiated Tori's move to that facility. It is our best interum option at this point. It will probably take place Monday or Tuesday of next week depending on whether Tori is completely stable or not.

Alright, back to the room for me and I'll be providing updates as I can during the weekend.

Thank you all and good night.

-Tim

Tori is refusing to go to sleep today... She was awake for most of night as I mentioned in my early morning update. She is yawning quite a bit and will close her eyes only for a minute or two. Hopefully she has zonked while I'm typing this update... We have also NOT seen any more heart rate drops since this mornings and we are hopeful that the removal of the Beta Blockers will resolve this issue.

Tori had Meagan, Missy, Caitlyn and Alexia from the dance team visit her today and she was very excited!! She had BIG grins and smiles throughout the visit and she was actually turning her whole head consistently from side to side to see the girls on both sides of the bed. They also brought her a NYC T-shirt which had written messages from all of the dance team on it. Maria and I read them all and we love those girls soooo much!!

Tori was also placed in a special, practice wheel chair to prepare her for the custom one which is being built. She spent about ten minutes in it and did pretty well. Again, we cannot wait to wheel her out of that room for a while!!

Another action we have seen from Tori today is her moving her entire hand and arm up to her throat then all the way down until her hand is by her side. She has done this in both directions and it demonstrates that she at least has her full range of motion.

Ok, thats it for now - time to go back and see if she is sleeping or not.

Thanks!!

-Tim

I don't know Tori very well. I went to Oak Canyon last year so I remember seeing her around, always being jealous of how cute she is. When I heard about this, I immediately began to pray for her. I didn't know her, and still don't really, but seeing the love that her family and friends have for her is amazing. She truly is an amazing person because so many people love and care for her. I have grown to love her just because she is so strong. I know now that she has an incredible spirit and personality and I hope that some day I can get to know her.

Well, I fore warned everyone in yesterdays update that Tori was beginning to try and use her new found arm and hand strength and coordination. Maria just called me and last night she successfully ripped her respirator and part of her Trach from her mouth twice and had the nurses scrambling each time... Maria also said Tori would not go to sleep during the night and that her heart rate did drop dramatically again at a couple of points. She is speaking with the doctors right now and I am heading up to the hospital. I will post any additional information when I can.

Thanks,
-Tim

All,

The Deseret News has provided another great article on Tori and The Dance Club today. Here is the Article.

They also did a reprint of the NY Times article released earlier this week.

Thanks,
-Tim