Tim Schmanski's blog

Hello there,

I'm slightly behind again on the updates so this one will probably be a little longer than normal. Tori and our entire family continues to sleep well and that is always great news. On Monday morning we tried a new adventure - Tori went to school!! :-) We have always been somewhat hesitant to the idea of introducing her to a school environment but Tori has been consistently signalling 'yes' whenever she was asked about going to school. Up until this point, Megan has been coming over to the house and working with Tori from THS (Timpanogos High School) which is one block away. Tori and I were able to sit in Megan's assisted education classroom where we met the other teachers and many of the student assistants. Several of the students were classmates of Tori's and were very excited to finally have her back at school with them. We didn't sit through a class or anything this time as we simply toured the classroom as well as the entire school. Tori also held the class rabbit who ended up leaving a giant bunch of hair on her lap :-) We spent about 75 minutes at the school and Tori did very well in the school environment. She was never agitated and actually fell asleep at the very end since we visited during her normal late morning nap time. Classes were not out when we toured the hallways but she did fine having the limited number of students passing by her. We didn't test being around massive amounts of students this time.

Our goal will be to have Tori attend school once or twice a week for a limited amount of time and with either Maria or I always present. We are also debating when this will actually start because Tori absolutely cannot get or be sick prior to our trip to China on January 11. We will cancel the trip and reschedule if she is ill because the risk is far too high and her safety would probably be in jeopardy. So we may wait until February upon her return from China before going back to school. To be continued...

Meredyth also stopped by for an ST session with Tori. Much more picture association and question type activities. There are a wide variety of these and they are hard to describe without just giving a few examples: Two cards, one with a fruit and one with a vegetable - "Which one is a fruit?". Two cards, one with an animal and one with an object - "Which one is an animal?". Two cards, one with a scarecrow and one with a glass of milk - "Which one scares birds away?". Etc.. Tori is usually 100% correct on all of her answers until she becomes disinterested and just closes her eyes and ignores the activity... That means that it is time to switch the activity of course ;-) Meredyth then used the yes/no switch and hooked another to the disco ball and computer where music was played after a switch press. That lasted for a while longer then they closed with some tongue and mouth exercises. The whole session lasts about an hour.

We are now fully engaged in preparing for Tori's upcoming trip to China for stem cell treatment. Maria's and my passport are up to date and Tori will get her picture taken for hers today. We will have to expedite the passport and visa process to meet the January 11 departure date. Since the news of Tori's trip has spread so quickly I thought I would take a second and answer some of the questions I have been getting. First, there is abundant information on the internet about stem cells for those who wish to gain a better understanding. Now for some Stem Cell 101: There are basically 3 types of stem cells - Adult, Umbilical and Embryonic. Stem cells are 'Parent' cells which means they can become many other specialized cell types (bone, muscle, cartilage, BRAIN NEURONS, etc.) Embryonic stem cells can become a wider variety of cells than umbilical or adult stem cells but they currently carry more risk as well and of course they are the ones where all of the ethical and religious issues arise. Tori will be receiving umbilical cord stem cells over embryonic stem cells based on the following scientific data which I borrowed from Michael's site:

"Experts acknowledge that embryonic stem (ES) cells are unsafe for direct medical uses. In general their problems arise from a basic cause—ES cells are designed to function in embryos, not in adult (postnatal) tissues. Their genetic programming doesn’t work in adults; nor can they properly sense or respond to local signals in adult tissues. But since they’re programmed to grow, if they’re not rejected ES cells can grow out of control into clumps of random cells. These non-cancerous, but often fatal tumors are called teratomas."

Here is the bottom line. Tori suffered severe anoxic brain damage and many of her 'brain cells' or Neurons have been destroyed. They cannot heal, they are basically dead and gone... The remaining Neurons will try and 're-wire' themselves to compensate for the loss of the others. The additional stem cells will provide the opportunity to create MORE Neurons. Of course the hope is that they will replace some of those that are dead and eventually provide us with much more of the Tori that we unfortunately lost.

China leads the world in stem cell research and practice and America continues to fall behind... Perhaps some day we will not have to travel to China to get Tori the help she desperately needs. But until then we will do what we have to. Here is the parent website ( http://www.stemcellschina.com/ ) of where Tori is going in China. The Patient Blogs and Patient Experiences located in the right column are very interesting as people describe their stem cell treatments in detail. It provides a great perspective on what to expect.

Thanks for hanging in there on this long update and the entire Schmanski Family wishes all of you a Happy Thanksgiving!!

Sincerely,

-Tim

Good evening,

Tori had another calm and relaxing weekend and was still seizure free. She slept and rested very well and was rarely agitated over the past three days. In fact, she went without xanax or zanaflex at all during a couple of those days.

Tinkers continues to work the Disco Ball switch and Tori does just as well :-) She also watched numerous movies as usual, snacked when she could and hung out in her wheelchair with her family. She had her extra long, weekend shampooing and sponge bath as well. Tori still seems to be improving with her arm control though it still wasn't as good as this past Thursday was. Some days are definitely better than others as we know all to well.

The BIG accomplishment of the weekend was finalizing Tori's new and upcoming treatment. Tori will be going to Hangzhou, China on January 11 for stem cell treatment. She will receive 50 million stem cells during her month long stay and will return home on February 12. She will also be receiving daily physical, occupational and speech therapy as well as acupuncture. Maria and I will be travelling with Tori and are we nervous about the 30 plus hour trip to Hangzhou?!? You better believe it!! That is a challenging trip for a healthy person let alone a person in Tori's condition... We are now very involved in planning all of the logistical steps and aspects needed for the trip. Passports, visas, the shipping of various items, transportation, accommodations, etc.. The list is daunting but we will do whatever it takes to make this trip happen. We want the MIRACLE!! We want our beloved Tori back!! I'll be providing much more information as we lead up to this trip and we'll be learning alot during Michael's trip to Hangzhou which begins in about a week.

This trip is made possible by ALL OF YOU!! Your support and donations are making this trip possible and we are extremely grateful. Words cannot express how thankful we are for all of the kindness and generosity exhibited for Tori and our family. Thank you all from the bottom of our hearts!!

Sincerely,

The Schmanski Family

Good morning,

I'll start by stating that Tori hasn't had another siezure for the past couple of days which is great news of course!! Hopefully they won't be returning. Tori continues to sleep very, very well at night and she is maintaining a 92-98% blood oxygen level.

On Wednesday night Erick, Leanne and Dave from Guaranteed Financial stopped by and presented the final donation check to the Tori Schmanski fund from this summer's golf tournament (picture to come soon). It took a while afterward to finish this due to all of the post tournament activities. Many who attended the tournament began taking candles and other Pray4Tori items to high schools around the SLC valley and they were really moving the merchandise. I'd like to thank all of you for this great effort and especially thank Erick for all he has done and is doing for Tori and our family. The overall support and contributions from ALL of you has been fantastic and it is greatly appreciated. I am finalizing some treatment and care for Tori now that will utilize all of your contributions and I will provide an update on this soon.

Thursday proved to be a great day for Tori!! Tori's daily agitation periods usually occur right on the clock. About 80-90% of the time Tori will need a 'half and half' as we like to call it each morning between 8:00am and 11:00am. The 'half and half' consists on 1/2 Xanax is used for anxiety and 1/2 Zanaflex which is a muscle relaxer that addresses high tone. About 100% time until now, Tori will need an additional 'half and half' between 4:00pm and 7:00pm and this is typically given while she is in her wheelchair during the early evening. We don't know why of course, but on Thursday afternoon Tori was in a completely calm and very aware state and she didn't require anything additional for the entire afternoon and night!! It doesn't seem like much but we always notice ANY and ALL changes in Tori's routine even if it is very small. Meredyth was working with Tori from 4:00pm to 5:00pm and Tori was just 'sharper' than normal. She went 12 for 12 on some objects on picture card questions where she had to look at two cards each with multiple objects and pick the card where a particular object was foremost. A ball in front of a table for instance. It was probably the hardest card selection test she has had to date. Then Tori worked with the switch doing puzzles on the computer. Her right thumb and left pinky were used to press against the switch and Tori seemed 'smoother' than normal on her control of the switch where each press filled in a puzzle piece. Tori closed the ST session with some mouth, tongue and lips therapy and enjoyed some pixy stick candy.

I was home during Meredyth's visit and witnessed most of Tori's effort and Tori was placed in her wheelchair immediately afterward. Tori still has the bad tendency to lift her left shoulder and arm directly in front her face. She basically places her elbow on her forehead and can't get arm back down no matter how hard she tries... It drives her crazy and us crazy as well... But last night, I mimicked Tori with my left arm on my forehead and just told
Tori to pull it down to her side like I do. This has never worked in the past but this time Tori just calmly and relatively smoothly brought her arm down to the pillow on her lap!! It's probably crazy that something this simple brings excitement but welcome to the Schmanski household :-) So Tori is not agitated and moving her hands well so let's try the 'place the hand' game where I hold out my hand in various positions and ask Tori to give me her hand. Tori is usually pretty good with her right hand on this but last night she using both her hands quite effectively and often at the same time!! So after placing her in bed I got out the disco ball and switch and set the timer for about 4 seconds of light and action once the switch is pressed. This makes Tori have to hit the switch alot to see the action ;-) Tori was very much on target with her right thumb and left pinky once again so I decided to challenge her by moving the switch around to different locations so she had to move her entire shoulder, arm and hand at times to reach it. What can I say?!? Tori just excelled and could get it basically anywhere I placed it and pretty much with EITHER HAND.

Again, why was Thursday night different than ALL of the other nights when we try the same stuff?!?! We don't know of course and welcome to the wonderful world of dealing with a severe brain injury... We'll always keep pushing Tori and we will continue to hope and pray for more days like Thursday, November 16th, 2006.

Here is a great closer for the update today. While Tori was operating the disco ball Tinkers the yorkie was watching the entire time from the chair next to the bed. I am not exaggerating in the least here but when I set the disco ball and switch back onto the floor that dog immediately went over and pressed that switch with her paw!! She would hit the switch, step back and watch the disco ball for four seconds then step up and hit that switch again, and again, and again!! It was totally hilarious and I had to finally pull her out of Tori's room to get her to stop!! :-)

Thank you all as always,

-Tim

Good day,

There are not many new Tori items to update everyone on over the beginning of this week. Tori slept pretty well Sunday and Monday nights but she had a seizure of some kind Tuesday night... It was one of those where she is sleeping, gets startled somehow and that initiates a seizure. There has been a few times where not even a startle sets them off but maybe her dreaming or something else. Needless to say, the seizures are never fun for any of us...

Meredyth visited Tuesday afternoon for an ST session and worked with Tori for a hour. She touched various types of material (cotton, socks, sandpaper, wrapping paper, etc.) on Tori's fingers and then asked her questions on 'Which is the softest?', 'Which is the smoothest?', etc.. Tori would be presented two options and she always looked at the correct answer. Afterward we tried getting Tori to close her lips around a bottle tip with candy flowing through it. We still can't quite get Tori to 'suck' on something... She can do everything else on command like open and close her mouth, stick out for tongue, etc.. We'll just have to keep working and working on this I guess. The Mac computer and some puzzles on it came next. Tori would press the big button placed next to the thumb on her right hand and another puzzle piece would be placed on the computer screen. Tori's thumb dexterity is vastly improved from what it once was. She can delicately lift and lower her thumb to press the button or when we ask her to touch her thumb against ours. Moving her arms to do something though is still a huge challenge because she can't control the shaking.

Thanks as always for all of the love, prayers and support,

-Tim

Hello,

Tori had a pretty uneventful and restful weekend. She is sleeping just wonderfully!! Maria, Whitney, Brendan and I spent the majority of the weekend doing a full scale house cleaning complete with carpet scrubbing. The house really needed it as we haven't had the time to clean it in that fashion since we moved into it.

Tori did get to spend additional time in her wheelchair as usual and she intently watched the 'Wizard of Oz' with Brendan on Saturday night. Gary and Toni also drove up from Delta and stopped by for a several hour visit and Mark and Julie provided Maria and I some company on Saturday night.

I guess the highlight of Tori's weekend was getting her hair shampooed and I'm sure that is fine by her because she thoroughly just loves it!! :-) Tomorrow we begin another week and hopefully it will be filled with more healing and positive direction for Tori.

Thank you all,

-Tim

Hello all,

Another couple of good days for Tori all things considered. She continues to sleep well and she's not sick which is the number one item we are trying to prevent. This winter will be challenging of course but the entire Schmanski family is getting flu shots. I got mine this week and the rest of the bunch gets them next week.

Megan visited Tori on Thursday and Tori continued to pass her quizzing with flying success!! Megan used a dual switch device with 'Yes' or 'No' labels attached to the two switches. She then quizzed Tori on all sorts of questions and Tori got the answers right about 100% of the time. Tori has alot of difficulty controlling her right arm and hand to actually press the correct button due to the tone and spasticity in her arm... But she tries like hell to press that button. That is all Tori - stubborn, determined, stronger than anyone can imagine and trapped in a body that she can't control... I truly believe this and soon we will have her answering questions by focusing on buttons displayed on a computer. Hopefully this will eliminate some of the frustration she has when trying to press those buttons and free her to answer even more questions.

Meredyth visited on Friday and had success as well. Tori did a variety of things with her as well. She worked her mouth and tongue in many exercises and they played with some games on the Mac as well. Meredyth also used a variety of cards that represented many situations that were fictional in nature with one that was an accurate situation. Tori would always pick the actual situation when asked.

Maria and Grandma Harris took Tori to the PCMC on Wednesday for a baclofen pump refill. They are concerned with the amount of muscle tone that Tori has in her upper extremities... Her arms, shoulders, chest and abdomen are still tight even with Tori receiving a LARGE amount of baclofen... They refilled her pump and upped her dosage even more but at this point she has reached the maximum for her weight. Tori will also eventually need surgery on her left ankle tendon.

Chelsea came to read to Tori and Brendan on Thursday night and Tori did very well. Brendan did as well :-) Thank you Chelsea!! I'm sure Tori enjoys different faces and activities from those other than her parents...

Alright, I think that is all for tonight. Thanks once again,

-Tim

Hello again,

Some more great sleeping by Tori over the past couple of days which means some more great sleeping for all of us!! :-) Tori also hasn't had any other seizures so that good trend continues as well.

We ended up taking Tori over to the brand new Dance Club facility on Tuesday night. The new place is just awesome and you can view all of the great pictures here. Tori really seemed to feel right at home during the open house with many of her friends and others around. We gave her the complete tour and checked out her nice plaque on the Wall of Fame. Thank you so much Sheryl!! Whitney also looked very cute standing next to her door :-) Finally, Tori was able to visit for a little bit with Allison Holker from the FOXTV hit 'So you think you can dance?' Allison just finished the dance tour for the show and is in town to teach at TDC for a while. The new location is even closer to our home and hopefully we will be taking Tori over there once in while to visit and watch some of the dancing activities.

Megan from THS visited Tori late Wednesday morning but they were only 15 minutes into the session when Tori fell fast asleep... We're hoping for better luck next time of course. I also had the opportunity to try out another camera mouse solution called EyeTech Quick Glance with Tori tonight. This system worked extremely well!! It comes with a high quality camera with an optical zoom and uses infrared lighting to closely watch Tori's eyes and target where they are looking. After we calibrated the system to Tori's eyes we turned her loose on the Aliens game she has played before with the EagleEyes device. Tori was hitting 10 out of 10 targets within a few games!! At first we would point with our finger to the target but after a while she was blasting all of the aliens completely on her own. Again, she is moving the mouse with her eyes during this entire process she had 8 games or so with perfect scores. The Quick Glance system is much more stable than the EagleEyes system and it is also far easier to use because you don't have to attach probes to Tori's face and head each time you want to use it. You can now simply place the computer in front of her and focus the camera on her eyes and she is off and going. The downside of the Quick Glance system is price as it is about 4 times the cost of EagleEyes... I will be getting a Quick Glance system for a monthly trial and we will make a far better effort in using it than we have with the EagleEyes system because anyone in the house should be able to work with Tori on the system.

Tomorrow Tori will be driven back up to the PCMC in SLC for another baclofen pump refill. We're not waiting for the alarm you can't really hear this time...

Thank you all as always,

-Tim

Good evening,

Tori had a relaxing Sunday after her busy Saturday when she attended the 'Art for Heart' concert with the rest of us in SLC. Her wonderful sleeping trend continues and she also has not had any seizures for a few days. It appears the increase in depakote is having positive effects already.

We decided to go shopping Sunday afternoon at Walmart and since we hadn't been in a while it was an extended trip. Tori was with us and she did great just as she usually does on any shopping outings.

On Monday Tori was able to spend several hours outside with Maria and Whitney planting bulbs and doing fall cleanup in the front yard. The temperature was in the upper 60's and Tori ended up getting what appears to be a slight sunburn. She enjoyed the fresh air and with storms approaching we are glad she was able to spend at least one more day outside.

Tomorrow Megan and perhaps Meredyth should pay a visit to Tori. Having Grandpa and Grandma Schmanski gone sure does keep things in motion at the house. It is sometimes hard with all of the school pickups and dance drop offs during occurring throughout the day but we'll have the rhythm established in a couple of days I'm sure.

Thanks for all of the love and support,

-Tim

Hello again,

Tori's great sleeping trend has continued over the last few days and we haven't had to bring back the oxygen to this point. She is basically sleeping throughout the night outside of a couple of changing's. Tori has also been having some mild seizures each morning for about a week now and her dystonia or 'jerking' has been more prevalent as well. Her seizure on Friday morning was much bigger and longer than any of the others though... We finally called on her last blood draw and were informed that her valproic acid level was down to 73.8 which is far below the 95-100 that we seem to need. So we have increased her depakote intake from 2000mg per day to 2500mg per day. In a week we will probably raise it again to 3000mg per day. Early next week Tori will have another blood draw and hopefully the valproic acid level will have moved up.

Tori had some macaroni and cheese, squash and some more cheese sticks over the past few days. She has also had her fair share of Halloween candy from suckers to her favorite mini m&m's. Tori does very well with those and she can realistically eat an entire package if we let her :-) Grandpa and Grandma Schmanski also left for Mesquite, Nevada this weekend and we will miss them dearly until Thanksgiving.

This weekend was also the yearly 'Art for Heart' benefit concerts for the Shriner's Hospital in SLC which Tori is a beneficiary. The Dance Club and two other local clubs were involved in the Friday and Saturday performances. We chose to bring Tori to the 2:00pm matinee concert on Saturday. Maria, Brendan Tori and I attended while Whitney performed in numerous dances. We had great seats in the second and third rows and almost center stage. Tori did wonderfully watching all 30 of the dances and took a quick nap through 3 dances and the intermission. I sat next to her throughout and watched her actions very closely. She knows and recognizes Whitney when she is dancing and typically stays focused on her throughout the routine. I am convinced that she also knows when all of her friends and former dance team members are performing. She will watch them more intently than the others and she will often close her eyes for a short periods of time. I wish I knew exactly what she was thinking but I think I have a pretty good idea because there is another completely noticeable behavior I observed during the dances. Tori will move her ankles and feet much more consistently while the music is playing and the dancing is happening. I know in my heart that in Tori's mind she is dancing with them all once more. I am truly convinced of this because when the dancing and music stops, Tori's movement does as well.

Good morning,

I'm a little bit behind on updates again but the past couple of days have been busy and good for Tori. So here we go!!

Tori ended up sleeping the entire night on Monday. She didn't wake up once which is very unusual for her and we have only seen her do it once or twice before. Of course Maria and I woke up often just to check on her anyway. She was still connected to the pulseox monitor but it never alarmed which is very good of course. And on that front, we finally removed Tori from her nightly oxygen on Tuesday night!! Hurray!! :-) She is now maintaining a 91-95% blood oxygen level even when she is in a deep sleep state. We are still leaving the pulseox connected for monitoring purposes.

Halloween was a very busy day for all of us with parties and activities throughout the day and night. Brendan (Ninja Warrior) and Whitney (Ballerina - surprise surprise :-) ) had parties at school, Brendan had one at my office as well and then they made the neighborhood rounds during the evening. Meredyth came over and had a very productive session with Tori. Tori created her own Halloween poster by picking and choosing every item that was placed onto it. She also worked with the red button switch controlling the disco ball. In another exercise Tori had to select the image items to be removed from a Halloween themed piece of paper. Tori successfully removed all of the items that were 'non-Halloween' related.

Tori continues to eat cheese, candy, ice cream, bread, yogurt and anything else that is present at the time. The amounts are still very, very small but we are always trying to increase. Tori is also very entertained when Brendan and Tinkers are playing around her though she becomes quite concerned if Tinkers is placed on her lap. Tinkers likes to give Tori kisses and Tori can't defend herself too well against them :-)

Megan visited Tori on Wednesday morning and began by asking Tori yes/no questions about colors. Tori wasn't in the mood to answer them so Megan changed the subject and started asking Tori about herself and her feelings. Here are Megan's personal observations from that point - "She answered all 17 questions with no help and very deliberate about her answers. She said she was happy today, that she likes spending time with her grandma, and that she enjoyed her friend coming over. She also said that she would like to come to school in her wheelchair. I asked that questions several times in several ways and she said yes to all of them. She also said that she has a hard time sleeping because she has nightmares. I just wanted to pass the info on. I think we need to try to get her to the school. I think it would be good for her." The nightmares response was interesting because Tori woke up at 4:00am Tuesday night and was extremely upset and basically screaming as loud as we have ever heard her. It lasted for 15 minutes after she awoke and took another hour to get her relaxed and sleeping again. We were pretty sure had a nightmare at that time and Megan basically confirmed it. We will also now work towards a simple school visit to see how that goes.