Tim Schmanski's blog

Hello all,

It has been a very challenging three days and nights for Tori unfortunately... Tori has slept hardly at all during the past few days and neither have Maria or I... Tori is having some pain and she let's us know that through her groans, grimaces and cries for help but she can't tell us where it hurts of course... So she has received alot of motrin, xanax and even lortab during the past few days. We will watch her very closely over the weekend to see if her temperament and condition improves, but if it doesn't we may be visiting a hospital once again... Her vital statistics are just fine at least - no temperature, she is breathing well, and her heart rate is acceptable. So we are in watch and wait mode at this point.

Grandpa and Grandma Schmanski returned on Wednesday which is great news!! Our lives and schedules operate MUCH MORE efficiently when they are are around as they are a tremendous help!! Unless you are in a similar situation, you cannot even come close to comprehending what caring for a 100% dependent person involves. Everyday is a challenge...

Tori has eaten well while she is awake during the day. I fed her almost a complete Yoplait strawberry and banana yogurt and she continues to sample on anything else we are eating. Meredyth keeps her eating the apple sauce and rice cakes mixture as well. Tori's lip closing around the spoon is still happening as well. She seems to have that nailed down right now and after a year of trying to get her to do that it feels good.

Tori had an assistant education visitor yesterday but she didn't respond too well. I think it was due to 'stranger danger' more than anything else... Meredyth stopped by today and had another, very encouraging visit with Tori. She let Tori bite down, hold and release on some beef jerky for one thing. Then they did more picture association where Tori had to look at the correct choice between two cards. Then it became interesting. Even though Tori gets the correct answers on all of these exercises we often question ourselves on where she is cognitively. I don't know, it's just hard to acknowledge it until she 'tells us' the answers and what she is thinking I guess. We see her each and every day and perhaps we read too much into what we are seeing and believing. Today, towards the end of Meredyth's session, Tori was shown some 'I Spy' cloned book pages. For those unfamiliar with the 'I Spy' book series, they are essentially pages and pages of hundreds of various items displayed. Tori was shown two pages in the book and was asked to locate many of the specified items with her eyes. Tori would scan the pages intently and eventually stop and 'appear to focus' directly on the item in question. Again, without her using her finger and pointing or telling us where it is at, Tori focuses at the correct position on the pages. From what we can tell she is 100% correct each time!! This was amazing today in several ways because she is typically closing her eyes and through with the session by the end. But she was still very active and awake today.

I'll be sure to post an update tomorrow as well on some additional stem cell research discoveries.

Thank you all and good night,

-Tim

Hello,

Tori's first two days of the week have been pretty good. She has slept well and her agitated episodes seem to have lessened a little. Tori has also eaten pretty well as she had almost a full yogurt on Monday night and then had chunky peanut butter, and apple sauce with crunched up rise cakes and cinnamon mixed in from Meredyth on Tuesday afternoon. Meredyth then did a variety of mouth exercises with Tori. Tori responded very well and when I fed her yogurt she has closing her lips entirely around the spoon as instructed. Meredyth also showed Tori about 14 pictures and asked questions while holding two of them up. Tori picked the correct card based on the question asked each time. Most were Christmas themed.

Tonight Tori's new home nurse stopped by. We had to switch home care providers because Tori's insurance company dropped the previous one... So I introduced Kim to Tori and gave her Tori's whole history. Kim will be stopping by about once a month to check on Tori and take blood samples.

I also wanted to update all of you who ordered Pray4Tori candles online. For Ever Body , who generously produces the candles, needs to manufacture some more as we went through all of the previously made candles. It was about 4 pallets worth!! A large amount for sure. They are a little behind in creating the next set due to the holidays so please be patient and I assure you all that you will be receiving your candles. Thanks again for all of your support and please keep those orders and donations coming for Tori!!

We are now about 28 days away from the BIG journey. I've been encouraging education about stem cells and I found this great commentary from Timothy Welby. It is very short, please read it. He is right on that we need to aggressively research stem cells as there are so many potential USES and many UNKNOWNS that need to be discovered. Embryonic and Adult stem cells need to be equally funded and researched as there is promise in BOTH. Here is an article about gathering and using adult stem cells from hair follicles . Amazing isn't it!! We are just barely scratching the surface on stem cells and their benefits!! They offer HOPE for Tori and our family.

In closing tonight, here is another recent update on Maya who went for SCT in China last May. Please continue to hope and pray for Tori to have Maya's positive results or even better. We miss her so much.

Thank you,

-Tim

Good evening,

Tori had a fairly good weekend and she was a little less agitated than she was during the week. Hopefully it represents progress in her getting used to the new Artane medication she is receiving.

Tori relaxed and watched movies for the majority of the weekend. We also took her to Costco and Walmart shopping today and she enjoyed small bites of various food samples. It is snowing very large snowflakes at this time and we have all been watching and enjoying Tinkers playing in the snow. That dog is trying to catch all of the snowflakes!! :-) There isn't too much else to report on at this point.

In exactly one month from today, December 10th, we will be beginning our trip to China. So I guess the 30 day countdown has begun to January 10th. I'm often asked about our expectations on Tori's upcoming stem cell treatments and what level of recovery will take place. The answer is that we are hoping and praying for miraculous results but there are no guarantees. There are many others who are experiencing positive results from SCT and Tori certainly deserves them as well. Kid's like Lukas who also has a brain injury and whose recent update indicates great progress. I also stumbled across the paralyzed Deering sisters who have begun there trip to Beijing today for a month of SCT. Here is an earlier article on the sisters as well. They hope to walk again. We hope to see Tori smile again. That alone would mean the world to us and make this journey well worth it.

Thank you all as always,

The Schmanski Family

Hello again,

Tori is having some difficulty adjusting to her new Artane medication for muscle tone. Nausea and dryness of mouth are the core side effects but they are supposed to diminish as the medication continues to be used. Tori is more agitated than she has been in been in the last while. We are sure she is nauseated because she has been spitting up her food at various times during the day... Thankfully the amounts have been small but with this now occurring we need to have an eye on Tori at all times just in case she really decides to vomit.

We have been giving her more xanax and zanaflex over past few days to counter her agitation as well. We are reducing the amount given though so we don't put her to sleep each time we give it. It's a trial and error process of course just like everything else.

Meredyth visited and had an ST session with Tori and Megan from THS stopped by a couple of times and introduced some assistants. Tori wasn't too cooperative this week due to the agitation and nausea... We'll hope for some better results with the visits next week.

We have received alot of supportive and encouraging comments in regards to Tori's trip to China for stem cell treatment. We receive more and more each day as the news of her trip spreads. It has also been interesting educating many on the science behind stem cells. Stem cell research is in it's infancy and I fully believe it will become more revolutionary than the discovery of antibiotics in the early 1900s and the first organ transplants of the 1950s. Here is another stem cell educational article that covers sight restoration in blind mice . And who knows, maybe George W's stem cell bill veto will be overridden in the very near future so we can get busy here in the US.

Thank you again for the love, prayers and support,

-Tim

Hello all,

Tori had her typical, relaxing Sunday as she watched Maria and Whitney decorate the Christmas tree and the rest of the house. So our day was pretty much all work and much less relaxing than Tori's but the decorating is now done and it looks great!! Brendan was the happiest of course because Christmas even seems closer now :-)

On Monday, Maria and I took Tori up to the PCMC (Primary Children's Medical Center) in Salt Lake City for an appointment with the rehabilitation team. We laid Tori on a padded table and they proceeded to take new range of motion measurements on all of Tori's joints. They pushed and pulled on Tori's legs, knees, ankles, toes, hips, shoulders, upper arms, lower arms and hands. They basically measured Tori's flexibility, or more realistically inflexibility, by measuring the degrees to which she could actually bend her joints. We then compared the results to those taken before the baclofen pump was placed and Tori has slightly improved on most fronts but her elbows, left knee and ankles are worse... Tori will need surgery on her ankles (her feet are pointed outward like a ballerina's) and left knee (it is hyper extended due to her muscle tone) before she can be placed in a standing frame or tilt table again. We really need to get her back in a standing position as it helps build all of the upper torso stabilizing muscles as well as her organs mainly because, humans aren't designed to be laying down all of the time... It's unhealthy.

Tori's spasticity and corresponding muscle tone is still very high in her arms, shoulders, chest, upper and lower back and abdominals... Tori is basically flexing her entire upper body while she is awake. Try flexing your biceps for about two minutes straight to slightly see how this would feel then imagine doing it all day, non-stop... Tori is also receiving the maximum dose of baclofen she can have at this point so we are going to now start giving her steady doses of Artane in addition to the periodic Zanaflex . Hopefully we can make Tori much more comfortable by can 'loosening' her up even more. It is a constant battle... If all of this fails our last approach will probably involve Deep Brain Stimulation . I am beginning the investigation stage and thankfully there is an expert in this field who happens to be in SLC.

Tori was unfortunately anxious and agitated for most of the day on Tuesday... She worked herself up to the point where she vomited again. She hasn't been that riled in some time either. She had some Strawberry Banana fruit smoothie tonight that calmed her for a few minutes but she was just 'on one' all day as Maria would say. We are hoping and praying for a better day tomorrow.

In closing tonight, here is another promising story on stem cells curing diabetes .

Thank you all as always,

-Tim

Hello again,

Tori's great sleeping habits have continued over the past few days as she hardly even wakes up during the entire night. We still have to get up to check on her and change her but she is even sleeping through all of that lately.

Megan came over from THS on Thursday but it was a late morning visit and Tori wasn't too cooperative since that is her nap time. She just wanted to sleep so she closed her eyes and refused to open them and participate... I'm going to try and get her to at least one of Megan's classes sometime this next week.

On Friday, we finally got Tori's passport situation squared away and we will have it in about two weeks. Then we will get the Chinese visas wrapped up and ready. We actually had to bring Tori down in person to the busy post office to get all of this done. At least that is now checked off the extensive list of things to do before the trip.

Mark and Julie visited Saturday night while Tori and Brendan watched 'King Kong'. For some reason, Tori has always loved movies with gorillas or monkeys in them. I think she was watching all of the old 'Planet of the Apes' movies when she was only 3 or 4 years old!! :-)

Dave and Michael have arrived safely in China and here are Dave's previous updates and his daily update as well. Michael will receive his first dosage of stem cells and NGF (nerve growth factor) on Monday. Please keep them in your thoughts and prayers. I also found another encouraging story from a recent stem cell recipient. Cole is a paraplegic who received SCT and can now move his toes and hip flexors. Stories like his are what gives us hope for Tori.

In closing today I would like to THANK ALL OF YOU for your continued donations to the Tori Schmanski Fund!! The fund is being used to pay for the SCT and all other treatments and resources for Tori that are not covered by insurance. Since my Donations page update 3 days ago activity has increased significantly. I would like to offer our sincerest gratitude for this support on behalf of the entire Schmanski family. Thank you all once more.

Until tomorrow,

-Tim

Good evening,

As mentioned in yesterday's update, Tori, Maria, Whitney, Brendan, Guy and I went out to dinner at a Brazilian steakhouse called Tucanos on Tuesday night. It was Tori's first restaurant experience since her injury. She was in her wheelchair next to our table and the place was very crowded and noisy. Tori took all of the activity in stride and she even enjoyed a very small amount of mashed potatoes and some diet coke. For the most part though, she just watched all of us eat and as well as the meat carver's who came to our table and continuously kept all of our plates full. It was very nice to be out to dinner as a complete family once again as that was always one of our favorite family activities. We'll be sure to do it more from now on.

Meredyth gave Tori an ST session prior to going to dinner and they focused alot on mouth and tongue exercises and did some switch pressing as well. Tori has been sleeping very well over the past several days so we continue to be pleased on that front. Tori also had some of the neighborhood girls her age stop over and visit today. Tori intently observed them all as they introduced themselves and remained calm and collected during the visit.

Guy headed back to Boston this afternoon and we're going to greatly miss having him around again... But the time he spent at our home was wonderful and we are sure he will be back soon.

I also spent some time today at the 'For Every Body' offices where they launched a new store and a press release on Tori's upcoming trip to China for stem cell treatment (SCT). Scott and Becky, the founders of 'For Every Body' also offered other items to support us on our trip to China where they often visit. They are running a new batch of Pray4Tori candles to support this trip and in case our price reductions have gone unnoticed, please visit the Donations page to review the new pricing. The Pray4Tori candles are now $8 instead of $16 as they were before!! The candles retail for $17 or $18 in stores so the new price is outstanding for this size and quality of candle. Thank you 'For Every Body'!!! The T-shirts and bumper stickers are also $8 each so please feel free to order and direct all of your friends and family to the site as well. Of course all contributions go to the Tori Schmanski Fund and are greatly appreciated. All of your contributions have enabled Tori's trip for SCT and will continue to provide her much needed support. Thank you all so much!!

And that is about all for tonight.

Thanks again everyone,

-Tim

Hello again,

Well, we survived the first big holiday break and weekend. In all honesty, the holiday season is challenging and very emotional for us all and we often find ourselves struggling more than usual... Tori should have been enjoying the day after Thanksgiving, early morning shopping with her mother as she always has. Tori should have been snowboarding with all of her cousins as she always has. Tori should be dancing with and enjoying the great company of all of her friends as she always has. Tori should be enjoying and sharing her life's findings with her family. But now she can't do any of that... And the thought that she will never do any of that again is well, very hard to deal with at times... Knowing the life Tori is missing out on, the dreams lost, the pain and suffering that she endures daily, the continual deterioration of her body, and the constant fear in our minds that she might not heal or recover no further... We feel this pain EVERY DAY and it NEVER leaves us. 'Being Thankful' certainly is hard at times... This is the harsh reality we live in and to this day the tears still flow almost daily at the thought of our loss and the struggles that Tori and our family are now presented with. We would give anything to have our 'normal life' back but of course that is not possible...

There are many others in similar situations who share in our pain and struggles. We are unfortunately not alone. Take for instance, Koo's post regarding Chris earlier this week which hit so very close to home... We as caregivers depend alot on each other and even more on ALL OF YOU who are there to love and support us on our difficult journeys. We are 'Very Thankful' for ALL OF YOU and we will NEVER give up in helping our sons, daughters, spouses, parents, family members and friends who need us the most.

In closing tonight I will share with you a story that was sent to me by one of the thousands of faithful supporters who visit this site daily. Please spend a few minutes to read it and watch the video from the link at the bottom of the page. Love is the guiding force in all of our journeys.

Here is the story and video .

Thank you all for reading this update and tomorrow I promise to spend more time on Tori's progress and her first night out at a restaurant for dinner since her injury.

-Tim

Hello,

Tori had a pretty good Sunday this week. During the morning she slept in along with the rest of us and then all of us went for a drive and a movie. Maria, Whitney, Brendan, Guy and I took Tori to see 'Happy Feet' in an IMAX theater in south SLC. The movie itself was awesome and Tori had to scan the massive size of the screen throughout but she did wonderfully!! In fact, I even witnessed the ever elusive 'Tori smile' during an early part of the movie. That alone made the adventure well worth it. By the time I motioned to Maria to look though she wasn't smiling any longer... Tori's smiles mean more to us now than ever. I placed headphones over Tori's ears during the movie to eliminate some of the excessive volume the movies always have. Again, Tori did great throughout the movie and took only a 10 minute nap or so towards the end. She was awake for the ending.

Brendan and I drove Tori home after the movie in the early evening while the rest of them went shopping. Tori went to sleep as soon as got her back into bed. Around 9:00pm Maria checked on her and she was just coming out of a seizure... Sometimes she becomes startled while sleeping and that sets her off. She was extremely 'loose' in her muscle tone afterward so she definitely had one. We are unsure on how to prevent them in the future... We have an appointment in early December to discuss Tori's muscle tone issues with the rehab physicians at the PCMC. Tori simply should be much 'looser' than she is with all of the baclofen she is receiving through her pump. We need to consider alternate medications to help on this front.

Grandpa and Grandma Schmanski returned to their winter location of Mesquite, Nevada on Saturday morning but Guy will be staying until Wednesday evening.

Thank you all as always,

-Tim

Good evening,

Tori had a great Thanksgiving Day along with the rest of the Schmanski family. Grandpa and Grandma Schmanski arrived at the house on Tuesday afternoon and Guy arrived from Boston on Wednesday night. On Thanksgiving Day TJ, Lorrie, Todd and Laurie arrived along with all of their kids as well. We had 18 people in the house for the day and Tori was right in the middle of all of the activities. She stayed calm and collected as she watched the kids run around her. Then she enjoyed dinner with the rest of us. She had very small amounts of cranberries, mashed potatoes, turkey, pomegranate jello and finally some cheesecake. She spent the entire afternoon in her wheelchair.

Tori's new EyeTech Quick Glance 3 arrived on Tuesday and we were finally able to try it out on Friday. It is an eye tracking mouse replacement device that allows the user to place the mouse pointer anywhere on the screen simply by looking at the desired location. "Clicking" can be done with an eye blink, a hardware switch, or by staring at a particular position. I've configured the camera and installed the software onto Tori's computer. We calibrated it on Tori Friday and had her playing the Aliens game. She did well but tired quickly and besides that we needed to adjust the software a little more. So we'll try it again on Sunday. The solution still appears to be very promising.

Tori slept well each night but she woke up at 5:00am Saturday morning for some movie watching. She had a late morning nap to compensate but was then awake for the rest of the day. She watched 'The Davinci Code' with Maria, Guy and Whitney tonight. On Sunday we are going to try and take her to a theater to see 'Happy Feet'. I finally found a theater with wheelchair seating that isn't in the very front of the theater... We'll see how Tori does.

Thank you for the continued love, prayers and support for Tori,

-Tim