My name is James and I live in Tallahassee, Florida. Recently I came across your web site about your daughter Tori. I have been monitoring the web site for some time now. Tori looks like a beautiful daughter with kind and loving parents.
The care that been provided to Tori is wonderful. I am so glad you have taken her to China for Stem Cell treatment.
I was big supporter of the Schindlers in Terri Schiavo saga a couple of years.
This one of the many Therapies that the husband denied to Terri Schiavo.
If Stem Cells can help Tori, I believe they could have helped Terri.
It was so awful the way she died and way the husband treated her.
Please never give up on Tori and continue to give your unending love and care to her.
Many familes are in desperate need of support and care like you. Perhaps you would like to contact some of these familes for support and to compare notes.
By pooling your resources and research together perhaps Tori and many others like her can benefit.
The Schindlers Foundation may be able to provide additional resources and support as well.
I'm very happy to report more great sleeping by Tori over the past few days and she even let us all sleep in a little bit this weekend :-) She is sitting calmly in her wheelchair tonight watching the Academy Awards with Maria and I.
Tori's new range of motion with her left arm continues to be troublesome because she keeps getting her hand in and around her mouth... We are trying various methods of pillow positioning to prevent her from repeating the motion but we haven't had much success yet. Tori also had her first 'real' PT visit this week and had some basic stretching done on her arms, hands and legs. The therapist cannot believe just how strong Tori actually is. I'm still continuing my stretching on her as well so hopefully we can maintain the progress gained during our Hangzhou visit.
Tori was very agitated Thursday afternoon and didn't participate with Meredyth who was trying to work with her. She usually gets alot of candy sucker tastes during the sessions but this time she decided to clamp down and not give the sucker back... Maria and Meredyth had to pry her mouth open to get it out. It also seems like Tori has been a little more agitated lately and we've been having to give her a little more xanax than usual. I'm not sure what that means but we'll keep a close eye on her. She is not ill and that is the most important thing. Megan will visit Tori for the first time since our return tomorrow.
Rachael and Brooke are headed to China for SCT and their wonderful parents have followed Tori's prior journey very closely. Here is a great news report on them and their upcoming journey to Hangzhou for SCT. We wish them the best of luck and for success as well!!
Thank you so the continued love, prayers and support,
The Schmanski Family
I apologize for the frequency of updates lately but I've been extremely swamped on many different fronts and I'm not sleeping very well to boot... But fortunately, Tori is finally sleeping through the night!!! It took longer than we expected of course but she thankfully slept through the night Tuesday and Wednesday evenings.
Tori's demeanor during the day has also improved probably because she is better rested. Her new range and ability to move her arms sometimes gets her into trouble and we frequently find her left hand in and around her mouth. She actually cut up her fingers a bit this week on her own teeth... So she has bandages on her left pinky finger now. Myra our home heath care nurse stopped by and took Tori's blood and vitals Wednesday. We also had our new Physical Therapists stop by for an initial evaluation. Now we are awaiting approval from our insurance company to continue the sessions. I have the feeling I'm in for another fight.... But I don't lose too many especially when concerning Tori. I'll continue to provide as much PT as a I can for Tori.
I'm also still interviewing for an acupuncturist and I have several donors who follow Tori's site offering EMS units which they no longer need!! Thank you!! :-) Megan was sick this week so she didn't visit Tori for any home schooling at my request but Meredyth stopped by on Tuesday and had a great ST (Speech Therapy) session. She gave Tori some clay with objects embedded and had Tori try and work them out with her hands. She also had sheets of paper or a board with various objects and had Tori select the correct choice via a question. Meredyth then covered the selection upon an answer from Tori and the board was eventually filled after a while. Again, Tori is using her eyes to choose at this point. We want her to use her hand and thumb to select with her new found control but are still working on that. Meredyth did mention Tori's hands were much more active during her ST session.
I'm very happy to announce that another local hero, Travis, is planning on going to China for SCT!! His mother Missy and family are raising funds now for the journey and we wish them all the absolute best of luck!! I am confident they will see improvements in Travis while in Hangzhou for SCT.
Glad to hear of your safe return and the improvement to Tori. This is encourging as my daughter Dena 39 years old has TBI as a result of a bus acccident. We are planning a trip to China in May and would love to talk to you about your experience and planning. I have read all your updates and they are very detailed. Perhaps you could give us some personal advise and your wife could talk to my wife, Eva to reassure her of the trip. We live in Park City.
Thanks, Bob Brehm email@example.com
Tori is still somewhat struggling to adjust to the new time zone... We thought the long weekend would help end it but she decided to stay awake all Friday night again. So we've been giving her medications and ambien during the past few days to try and help her sleep more at night. I think it has been working as Sunday night she was only up at 1:00am for ten minutes and went back to bed for the remainder of the night. Maria and I are fully back time wise but still catching up on some home and work items of course.
Tori continues to have visitors and it seems all of them comment on her improved awareness and color but I'm not sure it can't be contributed to not seeing in a while either. She also loves having all of her TV channels back again!! :-) I'm sure Tori has all those movies we watched over and over again in China memorized like Maria and I do... I've been doing my best on PT (Physical Therapy) duties with Tori but I cannot bend and stretch her the way James did. My techniques aren't nearly as good and I really don't like her crying and yelling at me while doing it... Our insurance company is supposed to pay for additional PT services since it is a new year so hopefully we'll have one assigned this week and get started fully again. Megan and Meredyth should start up home schooling activities and ST (Speech Therapy) again as well. I'm still searching for an acupuncturist and I might just buy Tori her own EMT (Electronic Muscle Treatment) or EMS (Electronic Muscle Stimulator) and learn how to use it.
Tori spent more time in her wheelchair this weekend sans arm rest pillows and was comfortable the majority of the time. We're still trying to feed her more as well. Another newspaper article about Tori's return from China appeared in the Daily Herald Sunday edition. It notes again some of the improvements in Tori which we are observing. The last sentence indicates we still haven't seen that smile which is true but Saturday morning when I was watching her sleep I saw a huge one. It was very unmistakably a smile and she must have been having a great dream of past days in her life I'm sure. Since she was sleeping I'm counting it as a smile but it proves again that her facial muscles CAN produce a beautiful smile. Now just show us one when you are awake Tori!!! :-)
Thankyou Jon for replying.Actually we know about Penny Thomas Been treated for Parkinson. But my husband been so tired from varios treatments since 1999 that each time we compromise that this will be the last one. So we want to see few more cases of this kind.We hope if we go for Stemcell treatment this will be the last one and this will be the cure for millions in pain.Thankyou and keep in touch.
Tori seems to be having the most difficulty adjusting to her home time zone which is 15 hours behind Hangzhou, China time. She is jet lagged for sure... I feel pretty good today but I was up between 1:00am and 4:00am earlier this week. Maria is also just about adjusted. But when you have to wake up and spend time with Tori in the middle of the night it makes it challenging... But Tori did sleep less than she has been today so hopefully she'll be adjusted within a few more days.
Even though I kept busy with work related items while in China I've still been playing catch up this week. Grandpa and Grandma Schmanski also headed south for warmer weather on Wednesday so Maria has been alone in caring for Tori this week. We are still in the process of lining up PT for Tori and are trying to find an acupuncturist as well. In the meantime, I'm trying to provide some of it. Only the PT though, I'm sure Tori wouldn't like me sticking needles in her ;-) Megan and Meredyth will start coming to the house again to work with Tori beginning next week.
Tori is continuing to progress!! Tonight I was working with her and motioning for her to raise both hands above her head in a 'touchdown' style and she did it rather easily. She even brought both arms extended outwards to me afterwards. The control on her left arm is still improving. When she raises her elbow above her head and puts her hand in front of her face she can remove it now if you demonstrate for her. In the past you would have to grab her hand and move it away yourself. Tonight she is in her wheelchair without pillows underneath her arms to clench. That means she has to control the position of her arms on her own and she is doing pretty well by placing them on the arm rests or across her lap. We will continue to closely look for more improvements over the next 6 months. Tori also received numerous Valentine's Day cards and gifts and thank you for that!! :-)
Now that we are finally settling back in again at home I wanted to specifically thank some individuals that truly made Tori's SCT trip a reality. First off, my parents Paul and Sandy Schmanski (Grandpa and Grandma Schmanski) for everything they have done for us and for caring for Brendan and Whitney during our absence. Honestly, we would have never attempted the trip without their support at our home. Secondly, Erick Caver, Keith Rossberg, Marilyn Hess and Becky Lunceford who made or helped make significant contributions to the Tori Schmanski Fund. And lastly, everyone else out there who has continuously supported Tori and our family in so many different ways. Thank you all and words can't express our gratitude to each and every one of you. We would also like to thank all of the medical staff at the Xiaoshan Hospital who were very professional, accommodating and most importantly caring.
Monday and Tuesday, February 12th and 13th - Day 31 and 32 in transit from Hangzhou, China to SLC, UtahSubmitted by Tim Schmanski on Wed, 2007-02-14 02:06.
Home at last!!
But WOW!! That sure was a LONG and EXHAUSTING trip... I guess the most important fact is that we made it home safely. Considering the travel time via automobile and airliner and our wait time at various airports our trip time was 44 hours in total. Tori did remarkably well during the entire journey but Maria and I were pretty much 'thrashed' by the time reached home. Maria, Tori and I went to bed about midnight Monday night and Maria and I slept until 1:00pm this afternoon. Tori slept pretty much all day today. I'm sure it will take us all a few days to get our day and night schedules back in line. Alright, I've included another exciting travel summary below for anyone interested and I'll begin providing updates again on our home (MST) time moving forward. This Deseret News article about Tori's return was in the Tuesday edition of the newspaper.
Thank you for your continued love, prayers and support,
Tim, Maria, Tori, Whitney and Brendan
Select 'read more' below for the complete Travel Time Journal
Travel Time Journal
Travel leg 1: Shanghai, Pudong Airport to Paris, France Charles De Gualle Airport
We pulled away from the Xiaoshan Hospital in Hangzhou which was our home for 30 days on Sunday, February 11th at 4:00pm. We travelled in the completely full van for 2.5 hours and arrived at the Shanghai airport at 6:30pm. Upon arrival we found the airport to be not crowded at all and had very few people actually which was great because we feared the massive crowds shown on the news. Despite that, Maria and Wendy had to take Tori on a separate elevator than the van driver I and even though she was first in line trying to push Tori onto the elevator a man tried to go right through Tori's legs and get on before them.... That was totally NOT acceptable so Maria gave him some well deserved and choice words in a good old English 'cuss out' fashion. He didn't understand a word she said but knew by her tone and if her looks could kill... Anyway, we were safe from the crowds because we were at the international terminal with very few flights going out and none coming in. We found out that we needed to wait a couple of hours before the airline agents were available for checkin so we had dinner and waited at the restaurant.
Maria, Tori and Tim have made it to Los Angeles, California. In a matter of minutes now, they will be together with Brendan, Whitney, Grandpa, Grandma, Cupcake, Thumbs and Tinkerbell. The house will be full again as a family gets re-united.
As they are on the last stretch home, I wanted to make everyone realize that they all just lived the Longest day of their lives.
For matter of simplification, I am going to cheat a tiny bit on the hours so that it is easier to remember.
Maria, Tori and Tim left Shanghai at Midnight (00:00) on the morning of Tuesday the 12th. As of 8:30pm mountain standard time, it is/was still Tuesday the 12th for them and it has been for over 35 hours! Now it is/was only 8:30pm at the time and they would have just landed in Salt Lake City. So another 45 minutes drive away from home + 30 minutes to get the luggages from baggage claim and loading the cars. In the end, it is very like that their February 12th 2007 will have lasted for over 37 hours.
There is a tiny detail as well. The day started at midnight. The flight from Shanghai to Paris is a late night departure. This means they have been up all day on the 11th before that.
So they could have had:
- breakfast in Paris by getting there at 5:30am
- lunch in Los Angeles by getting there at 12:50pm
- dinner in Salt Lake City by getting there at 8:30pm
Looking to make sure I didn't make mistakes with the flights and timezones, I found out something interesting... Today's flight AF0111 from Shanghai (PVG) to Paris (CDG) was canceled! There were meant to come home today I suppose.
Well, it is Sunday afternoon now and we have just about finished our packing. We should be leaving the XiaoShan Hospital for the Shanghai airport within three hours and our flight leaves Shanghai for Paris at 11:30pm tonight. We've been able to consolidate down from eleven large and heavy bags to 8 bags since we've used much of Tori's supplies during the month. I'm still a little bit concerned about the Shanghai airport since Chinese televising has been showing the enormous crowds and mayhem throughout the week... I guess it is now just time to endure another 30+ hour trip and get home safely!!! :-)
It's been slow during the past few days as Tori went through her normal PT, acupuncture and EMT routines. James and took her final muscle and joint range measurements on Saturday and they will compile the results and send them to me when finished. One result that really stands out is on her right knee as she could only bend it 7 degrees upon arrival. The final measurement was a 70 degree bend!!! That is HUGE improvement. Her other measurements will produce positive results as well and when I get them I will share them. I have ALOT of film footage as well that will be examined when home and carried onward. We are still looking for that PT person and now are in need of an acupuncturist.
All of the nurses have been saying their goodbyes over the past few days and we seriously wish we could just bring a couple home with us!!! Along with James of course ;-) There actually have been patient caregivers here who have done just that so it's not entirely an impossibility. We bought many gifts that we will share with the staff prior to departing to thank them for their outstanding care and support. We honestly do not have ANY issues at all in regards to our very kind and accommodating staff. The English lessons I have provided also seem to have been very productive!! :-)
Maria and I were able to get a Chinese massage Friday evening and we certainly were a little sore the next day but it was worth it for sure!! You can't really beat $10 for a sixty minute massage and in hindsight we probably should have took much more advantage of this.