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Maria and I attended the Dance Attack final session last night in Park City so I am a little behind in Tori's updates. There is actually very little information to report on since Tori slept pretty much ALL day Saturday. Grandpa and Grandma Schmanski stayed at the hospital Friday night and Tori finally went into her deep sleep around 10:30pm. She woke up sporatically throughout Saturday but only for 5-10 minutes at a time.

We have also increased Tori's continuous feed rate to 30 milliliters per hour through her NJ Tube. For her size, Tori should be recieving 80 milliliters per hour of continuous feed and that is our goal. Tori did end up having 3 bowel movements on Saturday which is an indication of progress on the digestive system front.

I have continued in heavily researching post anoxic myoclonus which is also known as Lance-Adams Myoclonus. There is alot of information on this on the internet and this site outlines the medications that seem to help the most. We have increased Tori's Valproate dosage because we want a level between 100-120 in her body at all times. Currently she is at 64. Once this level is hit I would like to reduce the Baclofen and watch Tori's drowsiness levels. I haven't been able to discuss Piracetam with Dr. Gooch, Tori's therapy doctor, but I am hoping to on Monday.

I might as well report on Saturday night activities since I am late on this update. Tori actually slept quite well and we used 2 doses of Valium to get her through the entire night. She did cough up quite a bit of Phlegm last night but the cultures are all still negative for a pneumonia.

Hello all,

Tori ended up NOT sleeping at all Thursday night and early Friday morning and she finally went to sleep today at 5:30pm or so... She was awake for about 34 hours straight and was agitated the most during early Friday morning. During the day today she was relatively calm but she just wouldn't sleep and we tried Valium a few times to help to no avail. She ended up going to sleep on her own.

We also had to put the NJ Tube back into Tori's nose and it runs all the way through her stomach into her small intestine. We began her feeds again through the NJ Tube to bypass her stomach and we are sure hoping that will work for a while. The doctors are still stumped on some of the stomach issues Tori is having.

One of the neurologists who reviewed Tori's EEG data told us it all looks normal and that the spikes presented during one of Tori's rythmic twitches are caused by Post Anoxic Myoclonus. This Web Site provides information on various Myoclonus classifications. This comment seems to describe much of Tori's activities "Frequently myoclonic jerks occur during an active voluntary muscle contraction ("action myoclonus" eg after lack of oxygen to the brain ("Post anoxic myoclonus")". Several other neurologists are supposed to review the EEG dat as well so we'll see what their analysis is.

I will also speak to the therapists on different types of medications to combat the Myoclonus including Piracetam which has offered great results to many people according to my research.

Thanks,
-Tim

What wonderful news for all of you today! Thank you for sharing. Tori sounds ready to take more steps in her recovery. Isn't she amazing?!? Hope you, Maria, and all other family members are getting some much deserved rest. Thoughts are with you all through the day. Prayers will continue. Hugs and kisses to Paul and Sandy, Whiteny and Brendan. Love, Auntie Jill and Uncle Donny

Hello all,

I have been starting with Tori's nights in my recent updates because they typically have a direct correlation with how her day will turn out. Tori ended up having another 3 Valium doses after her Wednesday night at 9:30pm Valium and Zanaflex doses. She wasn't quite as restful as the previous nights but she did go into one of her deep sleep states from 6:00am until almost 10:00am this morning.

She awoke and the therapists began their work. The speech therapist used ice water today in Tori's mouth and she didn't really like the coldness on her teeth but she did swallow the water just fine. Next the occupational and physical therapists came in and we sat her up in the bed again. She did well with this exercise just like yesterday.

Immediately following the therapists the Neurology Team entered and said the EEG would be done today rather than Friday. So they glued about 40 probes all over Tori's head and at 1:00pm they began gathering the brain wave data. One could easily see the activity during Tori's rhythmic twitching. Tori gave them various flavors of data throughout the day including no agitation or movement at all, minimal agitation and movement and finally a Thalamic Storm with maximum agitation and movement... The Thalamic Storm occurred this evening and the probes will remain on her head until tomorrow at 1:00pm so we will have a full 24 hour data cycle. They also used a video camera and record Tori through this entire process so her actions can be matched with the EEG data. Hopefully we will have an answer to Tori's twitching condition after everything is evaluated. Perhaps then we can adjust her medications accordingly.

The Botox in Tori's arms seem to be taking effect already since it is much easier to get Tori to relax and move them. We are looking forward to additional progress during the next several days.

Tori started today on a very good note by almost sleeping the entire Tuesday night!! She was given her Zanaflex at 11:00pm Tuesday night from which she slept until 2:00am when she had a coughing episode. We gave her a single dose of Valium at that point then she slept all the way until about 7:30am!! And of course I did as well :-) I'm really liking the Zanaflex at this point but I hope Tori doesn't grow another immunity to it...

The action really began at 9:00am or so when Tori had a bowel movement!! I know some day Tori will read this and come after me but this is important as it shows her digestive system is beginning to operate correctly again. We did have to halt her feeds temporarily again this afternoon because her stomach had some fluid build up which wasn't clearing as fast as we would like. Her stomach contents will be checked again later tonight and if its an acceptable level the feeds will begin again. All of Tori's cultures are still negative so that is great news as well.

Tori was in a very good disposition today with little agitation so we decided with the physical therapists to sit her up in the bed and place her feet on the floor. It went very, very well as Tori attempted to use her muscles to balance herself. She wasn't very successful at it but she was at least making the effort. Practice, practice, practice. She did better when they released her head and she attempted to hold it up. Up and down it went for a minute or so until she became tired. Her arms also seem to relax much better in the seated position probably because they are more difficult to lift all the way to her shoulders. We will now be doing this position much more frequently moving forward.

Tori's primary physical therapy doctors came in next and we decided at that point to get Tori some more Botox!! I got to help them shoot it into her troublesome right bicep and forearm which are always clenched, into her left bicep as well though not early as much as her right, into her right side neck muscles because Tori prefers turning her head to the left and finally her lower back which arches during each one of her twitches. We used the EMG again to position the Botox accurately. Again, the doctors can't seem to agree on the twitches and they are either Clonus related or Dystonia. It was also suggested they could be a form of seizures as well... The EEG is now scheduled for Friday and it will tell us alot as to what the twitches actually are. The EEG equipment will be left on Tori basically all day and we will be providing alot of stimulus during this process as well. The Botox shots did NOT affect her nearly as badly as her legs did a while ago. In fact we prepared for the worst and tried to drug her to sleep immediately after the shots with Valium, Zanaflex and Hydromorphone. They didn't even touch her... But the good news was that she wasn't really agitated or in pain at all. In fact she was more awake and active afterward than we have seen in a long time. Eyes wide open and tracking again, very little agitation, responsive to sounds and sights - it was all pretty good. She stayed like this almost all day until 9:30pm or so when she became really tired and agitated. We ended up giving her Valium and Zanaflex and this time she is out!! She was basically up ALL day so we are hoping for a good night of sleep but in the back of our minds we remember our last Botox episode... Maria, Whitney and I are all spending the night in Tori's room to keep a close watch on her.

In two or three days we should see some great Botox results on Tori. We are all hoping and praying that the greatly reduced stress on her muscles will ease and lower her agitation levels. We shall see.

Thats it for today. All in all a good day except for the temporarily stopped feeds. I think we can call today the third day of three positive days in a row :-)

Thank you all so much!!

The Schmanski's

Thank you so much for your continued support, thoughts and prayers for Tori. Her friends are so very important to her. A big "thank you" to those of you who visit Tori and to your parents for transporting you. Please, please do not forget her and continue to socialize in any way possible. I know this is a busy time for all you gals and guys, with school starting and everything. Her Dad says visits help her a lot. It must be really difficult for all of you to see Tori fighting so hard to get better but with your help and support it will make it easier for her! Thanks for all you have done for Tori and her family. Tori's Great Auntie Jill

When I heard about Tori's accident it really hit home to me. I was born and raised in Delta, Ut just as Tori's mother was. My dad and uncle and a few cousins still live there. I too, believe in miracles. She is a very special girl. My son attended the same school last year and has told me what a cutie she is! We don't know you personally but through this site we feel like we do. Our prayers are with your family daily. You are a special family that shows a lot of love and concern for everyone. May God bless.

The bracelets are in!!

I arranged for a large quantity of orange bracelets to be made and they have arrived. They read "PRAY4TORI".

We also used a member of Tori's stuffed animal 'strangling squad' to demo the bracelet :-)

The master plan is to give the bracelets away for a small donation towards the Tori Schmanski Fund. All of the Dance Club team members will be out and about looking for donations this weekend (August 4th-6th) at the Dance Attack in Park City, Utah where the Park City Arts Festival is being held as well. Posters and other items are also being prepared for this and other events.

We are going to come up with other creative ways to dispense the bracelets so don't worry all of you who will not be in Park City this weekend. More information will be coming soon.

Thanks!

-Tim

Hello again,

Tori required only a few doses of Valium late last night and very early this morning because she was given a dose of the Zanaflex which seems to work pretty well on Tori's agitation and twitches. In fact it works so well that today we decided with the Physical Therapists to give it to her regularly in two small doses during the day and a larger dose at 11:00pm or so for sleeping.

We were unable to get the EEG ran today and will try again for tomorrow instead. The Physical Therapists are also seriously considering more Botox for Tori's lower back and biceps to help with her discomfort in those areas. Tori had the full set of therapy movements done this morning and we also placed her in her wheelchair today and went touring for 30 minutes or so. She did very well again with the ride. Tori's cultures have not had any growth so she is still fine in that regard as well.

At 6:00pm Tori went into another deep sleep session with absolutely no movement and low, low vitals and woke up about 9:00pm. We are getting closer and closer to that 10:00pm time we want her to do this at :-)

Other than that it was what I consider another good day for Tori. Her feeds seem to be digesting great but she hasn't had a bowel movement yet even though she is getting medication to help her with this. This is the main issue we are monitoring at this point. Her feeds are still capped at 15 milliliters per hour which isn't too much.

Please continue directing prayers and thoughts to Tori and let hope for three positive days in a row tomorrow.

Thank you all so much,

-Tim

well i believe mare, kenz, and i went up i think saturday. we tried to get up there as fast as we could in the jeep hahha it was fun but we tried to get up there before tori had to go in for the surgery thing that took so long. (ohh i'm sorry babe just stay strong) so we got up there and we saw tim and they had took her back. we were sad :'(

Tim said she was having a really good day. She was watching the dance club company showcase! ohh i wish i could have seen her watching it. i would of also been crying with everyone else. ah the first part of that dvd just hits ya and makes my tears come out like waterfalls. so tim said just go eat cause we always go to hires every time we come up and see tori so he said go eat and just come back in about an hour or so. so we did and she was just out of it so we didn't get to see her.

The next day sunday we went up there. ohh poor tori the little thing so tinny and just hasnt't been feeling good at all. we got to talk to her for a little bit they were watching some harry potter. but she looked just really tired so we talked to her a bit told her about our weekend and just let her take a nap. hopefully she a got a good nap.

I hope she starts getting better and can start getting some food in her. i love ya tori babe you have come so far just stay strong you can do it babe. i love you Tim and Maria. you guys are just awesome the sweetest parents ever!!! :) hope you guys are doing good also.

I love you all keep staying strong!!! i'm praying for tori everyday!!! i love that girl :)

-Angel Ercanbrack