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Tori ended up requiring a Valium dose every two hours or so late last night and very early this morning. She continued to have the Myoclonic Jerks throughout this time. They were separated by 5-10 seconds each and at times quit for a few minutes but then they would return. Tori was not really agitated with them but they definitely prevent her from sleeping comfortably and soundly... Tori was also suctioned several times during the night as normal.

She had a fairly active morning and early afternoon as we placed her in her wheelchair for a while and had many visitors come by including Amber, Missy, Caitlyn, Meagan and Courtney. This group of girls came around 2:00pm or so and after about 10 minutes of conversation with Tori, she completely fell asleep!! I told them they bored her into it and to stop by anytime ;-) It was actually just great to witness as there were no drugs involved and she really, really went into a deep sleep all on her own. She was totally relaxed with a 80 beats per minute heart rate and a breathing rate of 15 breaths per minute and absolutely NO MOVEMENT at all!! No Myoclnic Jerks or Dystonia at all. I also firmly believe Tori can control those actions because if I can verbally get her to relax and become unagitiated at all they will go away for periods of time. Now we need to get her to learn how to do this then repeat as needed.

I also spoke to several of Tori's Physical Therapists about the Myoclonic Jerks or Dystonia. Again, they are unsure whether the 'twitches' are associated with either... I had Tori relax at one point to demonstrate her perceived control of them and they suggested running another EEG on Tori when she is having the referred to from here on out 'twitches'... By studying the neurological brain waves during one of the twitching episodes they can make a better diagnosis on the issue. Hopefully that is... Again, for everyone to visualize this, when Tori twitches she basically moves her wrists to her shoulders in a bicep curl type position and her lower back arches to some degree. Her feet and legs may also raise a bit during an episode. The movements all happen simultaneously and can vary in frequency and in force of the movement.

Grandma & Grandpa Schmanski need to get their two cents worth in and now is as good a time as any.

Brendan went with Lily – the cute little two-year old across the cul-de-sac who is madly in love with him – and they went to the park with her aunt. She said having two was much easier than one cause they can play together.

Brendan has been going to Montesorri school every morning and we pick him up early at l. Whitney has dance every day also so Grandpa takes her and picks her up. Right now Whitney is at Skylar’s house – probably in the pool and then they are going to a movie. Thank God for the lifestyle we are living these days – a lifestyle that allows us to just move right onto Tim & Maria’s driveway and plug our house in. This way we can relieve Tim & Maria of the stress of worrying about the younger two and the house and the cats. I can’t think of any other place I’d rather be right now.

Tim & Maria have so much to decide on and watch out for and take care of concerning Tori. I think those doctors have learned to consult with them before they make any decisions concerning Tori’s care. Todd’s right – they have strength and endurance and knowledge they never knew they possessed. Even though I may have spent 6 or 8 hours at the hospital – I always run to the computer to see what has happened because Tim can describe everything so eloquently. The web site is fantastic – thanx to Guy (whom we have adopted into our family along with Sophie). He said the site is getting 1200 hits a day. There is no way Tim would be able to respond to all the people who want to know how Tori is doing.

As far as the girls asking if visiting Tori was okay – it’s so appreciated so please don’t stop. I was reading a book about a boy who had brain injury from being hit by a car. The book was written by his Mom and one sentence read “His friends all stopped coming around. They had their own lives to live. They told me this would happen”. That part really made me cry. We appreciate the parents who are taking the time and making the effort to take you up to Primary – we know what a long drive that is. We welcome your visits so please don’t stop.

The 42nd Annual Schmanski Reunion, held in Ellsworth WI, Joan & Wil's farm, was dedicated to Tori. We wore yellow ribbons, shared stories of Tori and her family, said prayers, and gave lots of hugs and kisses to each other. I hope that Tori and her family some how felt all that love. Lots of digital photos were taken and I am working on getting mine to this place, but having serious technical issues so will continue to work the problem. When all else fails, I'll burn a CD and send it to Tim. UNCLE TODD: Great picture! You are a wonderful uncle and brother and your words were so touching. We all know that Maria and Tim, Paul and Sandy, and all of this family is so very close and dedicated to each other and they are all working just as hard as Tori is to get Tori better. I just hope that the small things that we are doing, as a family in the midwest, will also make a difference. We love all of you! Auntie Jill & Uncle Donny

Thank you Guy for the mid-day and evening updates you posted earlier. I don't have too much to add to them other than it was a half good and half bad kind of day...

The first half of the day went very well with the 'Day at the Spa' treatment and the like. Tori then ended up vomiting several times after 3:00pm but with very small amounts each time. She is indeed digesting some of her feeds because not all of it is coming out. She seems to have a fever again tonight and all feeds have stopped until tomorrow. Complete culture samples were also taken to make sure she doesn't have yet another bacteria or virus... We have been scaling up the feed rates from 10 milliliters per hour all the way to 25 milliliters per hour and since we seem to have hit the highest rate we can go now, we will probably drop the rate back down to 15 milliliters per hour or so. Tori handled that rate for quite a while.

Tori has been sleeping fairly well so far tonight but she is needing a Valium every few hours to keep her calm and resting. I'm heading back into her room now and hoping for some more peaceful rest for Tori.

Thank you all again,

-Tim

The 3rd floor waiting area got crowded tonight and Tim isn't sure he is going to be able to post an update soon.

Well, after posting a pretty positive update this morning, I am sad to mention that her afternoon didn't go as well as we all hoped.

She received a lot of visitors today. This is not an exhaustive list but Ryan and Melanie were there. Amber and April came in the morning. Marilyn brought Kenzie and her half-sister.

Starting around 2:30pm, Tim said that Tori showed signs of agitation. Around 3pm she started to vomit. She doesn't have anything in her stomach so it was probably bile. She looked quite uncomfortable and Tim asked that Tori get medication to help her cope with the pain. Her respiratory rate was really high and she was flexing her muscles (arms up to her chests and flexing her feet).

Maria, July, Sophie, Whitney, Brendan, Tim and I had dinner at the Noodle Company. Grandpa and Grandma were kind enough to keep Tori company while we ran out for dinner. I know that Grandma was hungry and despite that she chose to stay with Tori.

I very much enjoyed sharing my dinner with Whitney. She just has a way to make me feel better. Whitz, if you ever read this: you are just the coolest – I love you.

If anyone wonders, Whitney and I shared Pasta Fresca and Pesto Cavatappi. Whitney, Brendan and I all agree that after trying a few dishes there, the Pesto Cavatappi is the best one.

Tim was joking today about us needing to invest in Kleenex. Tori has been downing the boxes of everyday regular facial tissues (brown color).

As we were leaving tonight, Tori's temperature was a little high. Her nurse ordered blood samples to be taken. Hopefully her temperature is not related to another infection. The blood cultures will tell.

Both Tim and Maria decided to stay with Tori tonight.

Thank you,
-Guy

Got a chance to talk to Tim on the phone briefly today:

Todd and Tori Schmanski spent a quiet and peaceful night together. We would like to thank Todd very much for spending with Tori. It was very considerate and brave of him to stay by himself.

She only received two doses of Valium to help her relax and sleep. Last night again, suctioning her seemed to have helped make her comfortable upon signs of agitations.

It is worth reminding that Tori is being repositioned every 2 hours to help prevent pressure points and more simply because we all move and she needs to as well. Switching from one side to being on her back to the other side. They also continue to put her hiking boots on several hours a day. At this point, Tim and Maria managed to provide Tori with one of the funkiest socks collection there is (Elton John would be jealous).

Tim and Maria made it up to the hospital fairly early. They gave Tori a bath and washed her hair. When I talked to Tim, he mentioned that they were trying to get her to nap. They would like to sit her on her chair if she is up for the challenge today.

Amber made it to the hospital this morning and was able to visit Tori for a while.

Thank you,
-Guy

As Guy reported in his mid-night and early morning update, Tori had another restful night and required only two doses of Valium to keep her soundly sleeping. Thank you so much Tori for giving Guy and Grandma Schmanski a peaceful night as well.

This morning when Maria and I arrived Tori was in the most comfortable and relaxed state we have seen her in for a long, long time. Her arms were loose and resting on her stomach rather than in the normal tight biceps and wrists to the shoulders position. We could easily move her arms and legs around and no resistance was offered by Tori. She was awake and calm as we did this and she did NOT become agitated at all!! Better yet, she wasn't on any anxiety or pain relief medication at the time either. She was just on her standard medications: Baclofen for Spasticity, Propanolol and Clonidine for Thalamic Storms, Valproate and Clonazepam for Myoclonic Jerks or Dystonia. At some point we would even like to trim that list down a bit...

So Tori was in a perfect state for an experiment this morning. We brought in my computer and the "Dance Club Company Showcase June 30, 2005" DVD which we just received and has all 52 dances the company performs at competitions. Maria and I actually attended the Showcase when it was recorded. Earlier this morning, our initial viewing of the DVD brought out many tears for Maria, Whitney and I because there is a moving tribute to Tori at the beginning. We will try and post it to the site for everyone to view as soon as possible. We placed the computer close to Tori and hit play and Tori began watching the DVD. Her heart rate jumped 20 points immediately and her breathing rate increased as well. Her eyes became wide open as she watched the tribute and everyone except Tori cried again... Tori was truly enthralled with the DVD and the numerous dance performances we played for her especially those of which she was originally in. Watching her dances and listening to the music for them definitely stirred her and her arms and legs began to move as she continued to watch. She watched dance after dance and remained relaxed and focused on the screen until we had to stop and get her ready for her PICC Line insertion. We can now hardly wait to try this type of stimulation again!!

My name is Lindsay and I'm a student at BYU. I don't know Tori or her family. About a week and a half ago I happened to see a car with this website written on the window. It made me curious as to who Tori was and why people were wanting others to pray for her. Since then, I've made quite a few visits to this website to learn about her and her family and to check on her status. My prayers definitely go to Tori and her family. My oldest brother had to have emergency brain surgery at the end of his mission and was not expected to last even through the day. He was in a coma for a number of days. I want you to know that miracles do happen. He woke up and miraculously recovered. It's been 8 years and he is almost fully functional now. He's been married for 3 years and has a beautiful little daughter. Doctors never expected him to wake up. Though my family's story is different than yours, I do know that miracles happen and Heavenly Father answers prayers in his own time and in his own way. Thank you for sharing Tori's story with the world. She's a fighter and I add my prayers to many others'. May you have the strength to endure the road ahead. She truly is an inspiration to many. God bless.

Lindsay

Hello school is about to start and that means summers practically over which sucks! but anyways i was wondering if you would still like visitors to see tori soon, like tomorow and next week? i wasnt sure because she is sick right now and it might not be the best time. but i really miss tori and i want to see her! but just tell me if its ok or not just so i know or post it so people know when to come! thank you! i love you tori so dang much and i miss you! but be strong and i know you can do it!!

-AMBER-

Tori is having a really decent night tonight so far. I am crossing my fingers and so is grandma Schmanski.

After giving Tori a dose of Valium at 9:30pm she has been sleeping soundly.

Her respiratory rate monitor is a little defective and it triggered an alarm at 1:10am. That woke her up but she managed to calm herself down and went back to sleep.

She coughed once and we used the catheter once to suction her.

It's now around 2:30am on saturday morning. We just got done repositioning her. She was given another dose of Valium because it was available and we didn't want her to interupt her good night of sleep.

Grandma was able to lay down on the coach for a few minutes but I do not believe she slept much.

That's basically it for this short mid-night update. Since I couldn't sleep I figured I would let those who can't either know how Tori is doing.

We hope that she continues to rest.

Good night,
-Guy

PS: as I sending this, a bunch of people just ran across the mezzanine above my head just a few seconds ago. I can now hear the helicopter coming in. Best of luck to whoever it is they are bringing in...

update at 6am: Grandma finally felt aslept around 4:45am this morning. That's actually when Tori woke up for a little bit. She got a little agitated. 15 minutes later, the RT came in and suctioned her. She relaxed after that and went back to sleep without requiring any medicine.

update at 9am: We bothered Tori for about an hour. A bed sheet were wet so we changed all of it. She is still very relaxed and resting. her nurse did her hair as well. She slept a few more hours since the last update and we can only hope that her nights continue to progress this. Grandma did awesome. I have to admit that I was a little worried at first but Tori made it really easy for us and on herself.

Thank you Tori!
-Guy