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The Daily Herald published an article about Tori and her upcoming journey to China today. Tim and the rest of the family were interviewed recently regarding the stem cell treatment that Tori is scheduled to undergo in just a few days now.

You will find the article here.

From the article: "Tori Schmanski may not be aware of it, but she's about to go on a trip that could change her life." ...

The article is part of the Paper's top stories this morning and can be found at http://www.harktheherald.com/. You can read the posted comments on the article here from registered readers of the newspaper.

Happy new year to all of you and your loved ones. May it bring good health to all that we care for and Tori in particular,
-Guy

Hello and Happy New Year to all!!

Well the holidays are finally wrapping up down and we all could probably use a holiday from the holidays as well. Tori didn't get sick after all and has been doing pretty well. She has also had numerous visitors throughout the past four days. She spent much of her time in her wheelchair amongst the family in the kitchen and family room of the house. She has had two mild 'startle seizures' though and we're not sure on if there is anything else we can do for them as she is already on Keppra and Depakene which are core medications in preventing them. I found some information on Startle Epilepsy but don't believe that is what Tori has. It is more likely Hyperekplexia caused by the injury to her brainstem. We will continue to do our best NOT to startle her I guess.

Tori will have her baclofen pump refilled on Thursday and she will also have her next round of botox injections and she is certainly due for them. Tori's muscle tone and tightness continues to grow worse as the botox eventually wears off. Having this done prior to the trip to China is absolutely necessary and given the seizure and other challenges from the last injection, they are going to put her under anesthesia this time. The last botox injections were a little rough on everyone from Grandma Schmanski, Maria and the doctors and nurses doing the injections...

Tori's passport still isn't in hand but as far I am told there are no issues and it SHOULD be processed by Wednesday or Thursday of this week. Then we'll pay for the expedited within 24 hour visas. We will all just feel MUCH better when this is finalized and the needed passports and visas are in hand...

We hope and pray that the new year brings more miracles and continued progress for Tori as well as strength for all of us helping in and supporting her journey. While her progression has been painfully slow lately our love, devotion and dedication to her always remains. Our hopes are high on the China trip and the stem cell injections Tori will receive. A breakthrough in her progress would certainly be welcomed. Michael's trip is almost complete and I found these two updates (One and Two) on the Deering sisters who arrived in China in early December. After reading those promising articles I was brought back down to earth somewhat after reading another one about America's continued loss of ground in stem cell research ... "The United States also possesses something other countries cannot buy or steal: the breadth and depth of its scientific prowess." Absolutely agree!! So let's get off our moral high ground, get moving and start using this prowess!! This fantastic article from the United Kingdom is right on - "When George Bush banned funding he effectively put researchers into quarantine"... Thankfully there still is SOME privately funded stem cell research going on here at home at prestigious schools like Harvard.

In closing tonight and for the past year, we are truly blessed, humbled and grateful for all of the love, prayers, thoughts and support directed towards Tori and our family. Whether from friends, family, the community or from complete strangers, it DOES have an impact on ALL of us. I'm often still pleasantly surprised and sometimes moved when a stranger recognizes me, approaches and declares "I Pray 4 Tori every day". Please, please never stop doing that!! That includes the prayers as well as the approach and comments. This gives us strength and helps keep us all going as we encounter feelings of happiness and hope along with sadness and despair each and every day... It is very hard to not long for how it once was and most often this brings only pain and sorrow. Focusing our thoughts on Tori now, her healing and her recovery is much more productive and where our thoughts need to be. Each day is a gift.

Sincerely,

The Schmanski Family
Tim, Maria, Tori, Whitney and Brendan

Hello,

Tori and the rest of us have been recovering nicely from all of the Christmas activities although I had a bad case of the 24 hour flu all day Wednesday and Wednesday night... Upset stomach, muscle aches, head ache and the cold chills... It wasn't very fun but I feel much better today and I isolated myself from Tori so hopefully she won't or hasn't caught it...

I say 'hope she hasn't caught it' because Tori had a pretty rough Wednesday night as well... She was miserable throughout the night and we had to use lortab, xanax and zanaflex multiple times to try and calm her down. She was didn't sleep hardly at all so we are hoping she can catch up on that today.

The China trip planning continues each and every day. I have contacted each airline and have arranged for special assistance and they will be prepared for our arrival. I also have approval to bring Tori's liquid medications and food through the airport checkin. I don't know why but even with all of this preparation I'm not real confident we can make it through without any issues... Prepare as much as you can and expect the worst I guess and hopefully we will be pleasantly surprised. We shall see.

Tori's passport issue still is not resolved... I am in daily contact with the Passport Agency support center and currently there aren't any more known hold ups and the passport is being 'processed'. They won't give you a confirmed complete time either which is very frustrating... I've now been told if there are no further issues identified the passport should be sent sent anytime between now and next Tuesday... ARGH... Once we actually get her passport we can submit for our China visas. Most visa service companies advertise 3-5 business day turnarounds but I have found one that advertises 24 hour turnaround. We'll probably end up using it just so we can have everything in hand ASAP!!

Maria and Grandma Schmanski played alot of hand written card games with Tori Wednesday and Tori aced almost every question. Word games and even math problems were presented to her and she would acknowledge the correct answer by staring at it or lifting her head while staring at it. Grandma is convinced Tori can read and can read some French as well because they also played with French words at times.

Alright, that is about it for now.

Thank you all as always!!

-Tim

Merry Christmas everyone!!

Tori had a couple of good and enjoyable days along with the rest of the the Schmanski family. She had plenty of company on Christmas Eve day as there were 18 people over at the house enjoying the day. Tori spent the time in her wheelchair watching all of the activities around her and sampling many of the goodies that were present. Here are a couple of pictures showing Tori enjoying herself and Tori opening presents with Whitney . Tori did very well on both days and was right in the mix of things each day.

Tori and I often play a game where I raise my right thumb and she matches by raising her right thumb. Then we touch them together and she mimics me by raising and lower her thumb as I do. Saturday night though she did exceptionally well by moving her arm, hand and thumb to where ever mine was placed. She was quite steady and she was very accurate in pressing her thumb against mine. She demonstrated great control and we hope for much more of it in the future.

We are very blessed and grateful for all of the love, prayers and support bestowed on Tori and our family each and every day by people from all over the world. As a family, we are dedicated and committed in our continued efforts to do everything humanly possible to aid in Tori's healing and recovery. We constantly aim to provide her the most caring and loving home environment and best quality of life that we possibly can. That will never end.

Tomorrow begins another week and we have much to do prior to our trip to China. Tori's passport and our visas are our top priorities of course. Hopefully we can resolve ALL of this by the end of the week and be all ready to go!!

A heartfelt THANK YOU to you all and please have a wonderful holiday season!!

With love,

The Schmanski Family

Good evening,

Tori continues to do well prior to her journey to China which is now 18 days away and counting. Her sleeping trends have been great, her awareness has been good and her anxiety levels have been manageable. However, Tori did have another seizure early Friday morning but that has really been the only issue she has had during the past three days. Maria walked into her room during the final moments of the seizure. It has another one where she was sleeping soundly and must have had something startle her. Those are very hard for us to catch unless we are in the room even when pulseox monitor is connected... The is NO DOUBT to whether she has has a seizure or not afterward because all of her limbs are completely loose and limp. I'm talking about 'spaghetti noodle' type limp in her arms, hands and fingers. You can move them into any position desired post seizure. It is really quite strange... Her brain must not be firing ANY signals to her muscles after a seizure for some reason.

Tori has had chocolate pudding, cheese, popsicles and even some spaghetti over the past few days. The visitors also continue to stop by. Guy also arrived Thursday evening from Boston for the holidays and we are excited to have him here!! :-) Tori spent Friday Saturday night in her wheelchair watching the Utah Jazz professional basketball team play with Grandpa Schmanski and I. They won another close one!! :-)

Now for the bad news update and my highest stress provider... Tori still DOESN'T have her passport... The Passport Agency received the doctor's letter stating she cannot sign the passport but now they want additional information. You see, when Tori was born the hospital lost her birth certificate so we went through a long process about 10 years ago to get her one. We had to get the official doctor's notes from the birth itself and had to also get several signed and notarized affidavits from birth witnesses which included myself. You MUST already have that information to actually get a birth certificate from the State of Utah and of course we had it. But for the US Government that isn't enough... They MUST have the additional information as well... LUCKILY, I kept that additional information in Tori's file and I have already sent it back via certified mail. With Christmas, the earliest we can get it now would be Wednesday or Thursday of next week. I call every single day for an update and if I hadn't called on Friday I would have never even known they need the additional information. Let's just say I am a bit frustrated at the moment... So once again I ask that PLEASE, PLEASE come through for us good ole' US Government...

On the stem cell news front, here is an article on open brain neural stem cell transplants . Again, I believe for Tori the research on this is far too early and experimental. But with positive results it wouldn't surprise me if it was commonplace within a few years. Here is one more on brain regeneration after a stroke . Strokes typically cause an anoxic brain injury like Tori's due to lack of oxygen to the brain but Tori's injury unfortunately is on the severe side of the spectrum... Hopefully some stem cell treatments will help promote her brain regeneration.

Thank you all as always,

-Tim

Hello again,

I've been struggling a bit lately in keeping up on Tori's updates... Things are quite busy with Christmas around the corner, kids getting out of school, work obligations before the holiday break and of course planning a 32 day trip to China with Tori.

The good news is that there aren't really any negative Tori issues to report on. She is still doing pretty well in that she is sleeping nicely at night, agitated usually only once per day, active and aware during her therapies and most importantly keeping free of any illness!! She did well in her ST session with Meredyth today. They did the usual card and object selection exercises combined with more mouth exercises. Tori ate a large quantity of cotton candy during the session as well. She also has been having snacks with the family each night. Yogurt, chocolate pudding, chicken soup, pepsi and popsicles just to name a few items. She is still consuming very small amounts but she has been swallowing smoothly and coughing rarely. In reading the updates from many other stem cell recipients it appears that mouth control, swallowing and eating are some of the prime improvement areas. We shall see.

Tori has had alot of visitors stop by lately as holiday gifts and such are getting dropped off. I won't begin to list all of you but I wanted to thank you all none the less.

We are having a slight issue on the China trip logistics but I hope it is resolved by tomorrow. We took Tori into the post office to submit her passport paperwork and I had to obviously sign her form for her since she cannot. The postal agent then placed a note with the submission and assured me it would be fine. We chose to pay extra and expedite the passport in two weeks. Well... Two weeks later I get a passport letter stating the Tori must sign the form... ARGH!!! Why didn't they just send us that a day after they received the submission?!?! Why wait until the two weeks is over?!?! Sheesh... So I had Tori's doctor write a letter describing Tori's injury and why she can't sign and I then sent it back to them on Monday. I'm waiting and tracking for the certified mail to be sent back to us HOPEFULLY tomorrow with Tori's passport included. We still need to get our visas for this trip so time is of essence here and we can't afford any more delays... So PLEASE come through for us good ole' US Government...

Other than the passport obstacle, the other China planning issues are going fine. We've got a list and are checking it twice :-) We are planning to do some practice packing over the holiday break.

Here is an encouraging article on David Aldrich's China trip and progress since. More hope!! Here is another one on Public misinformation about stem cell issues . And finally an article on Linda Maher who proclaims this - "So far so good. Everything is going great for both of us - I just feel so much better in general since I came back from China – and that kind of result you just can’t put a price on."

Thank you for the continued prayers and support,

-Tim

Good evening,

Tori was much more comfortable over the weekend than she was the three days prior. She didn't seem to have any of the painful grimaces and cries that she had previously. We can't explain what was causing her the pain at this point but we are happy it is gone for the moment. All of us were able to catch up on some sleep and Tori led the charge by sleeping all night and well into each morning. We were very grateful for this so thank you Tori :-)

Tori watched alot of Christmas movies over the weekend and Whitney and Brendan spent much of their time outside playing in all of the snow. We had about 5" on Saturday and another 5" on Sunday. It is very cold now as well so I'm sure we will have a white Christmas this year.

Tori spent more time in her wheelchair as she usually does on the weekends. She watched Maria wrap presents during Sunday afternoon. She also had a sponge bath and hair washing today which she totally enjoyed as normal.

Tomorrow begins another week of activities for Tori and we are looking forward to a whole new list of activities when we arrive in China. Dave has been updating Michael's site during their trip and for the most part everything is going smoothly. We are learning a great deal from their trip and have made several changes because of it.

Here is an article on how Neural Stem Cells help the brain self repair.

Thank you all for your continued prayers and support,

-Tim

Just a quick note to say hello again and that I'll say some extra prayers for Tori to find comfort and ease whatever pain she's having. You all have a beautiful daughter and I find myself staring at her pictures just feeling sooo much emotion for her and you, her parents. I understand so much of what you're feeling, especially the desperate search for any and all treatment possibilities. It's a daily thing for me for Samantha. Have you ever heard of the study using Amantadine to help those that are listed in the minimally conscious state? I believe it was the key factor that helped Samantha break through when she was not yet doing any real purposeful movements or following commands. I know our daughters injuries are different, each brain injury is so individual, but this medication is under Federal study so it had to pass a number of preliminary tests first. Another mom told me recently that she felt Amantadine was the deciding factor for her daughter who was over a year post injury and on 35 different med's at one time. I'll be glad to email you the info if you haven't heard of it and are interested in checking it out.
May God have Tori & Samantha in His healing hands right now.
In His love, Diana Palumbo

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

Hey Tim
I can not advise you legally but it will get better. I had a Chinise doctor work with Debbie 3 time a week for 1.5 years and learned too much. Every one has to follow there own path. Tori is with me all the time I can never get her out of my thoughts and your family also it will get better with time I know first hand. From what I read you have some of the best doctors. In china will you be the same place a Michael. Peg tube and baclefin pump you have worked out. I am always with Tori like the air you breath but can not see gods will be done. I can tell you will never need me but I will always be here if you do. Merry Christmas to every one in your family and our prays our with Tori always.
Jerrall