Tim Schmanski's blog

Monday, Tuesday and Wednesday - March 5th through 7th

Hello again everyone,

Tori is remaining healthy but her agitation levels are continuing to rise unfortunately... We feel it is due to the extreme tightness in her upper body and limbs and it will be hard to wait for the next round of botox and phenol shots she desperately needs to reduce the tightness. She has been really 'riled up' the past few mornings and that causes vomiting, profuse sweating and again even more tightness in her body. We've had to use xanax, zanaflex and valium quite a bit lately to help control her agitation levels.

She does well during the times when she is calm so we are hoping for more of that time. We have been feeding her yogurt and applesauce daily with the goal of one full container per serving. She has been devouring popsicle pieces as well and she seems to be drooling a little less than before. Perhaps she is getting better control of her mouth and throat at this point.

She has had her first PT and ST sessions of the week with two more remaining. Meredyth brought in makeup, mascara, a comb and some toothpaste. Tori selected the correct items based on questions like "Which one goes on your eyelashes?" then Meredyth applied some of the items on Tori if she indicated to do so. They did more facial and mouth control exercises as well and Tori was able to suck some liquid candy out of one of those 'candy baby bottles'. That is a pretty big step actually because if she had start using that 'sucking technique' we can eventually get her using a straw. Tori also went through the PT session with Shawn without much concern which is of course good news.

I have scheduled an acupuncturist appointment for Tori and I am looking into a few others as well. It might take trying a few of them to find the right fit. It is supposed to warm up this weekend so hopefully Maria will be able to take Tori outside for a while. I'm sure she is tired of being locked up in the house all of the time... Brendan and I leave for Disneyland Friday night and will return Monday evening. We are both looking forward to the trip but we are already missing having our entire family with us to share in the experience.

Thursday through Sunday - March 1st through 4th

Hi there!!

Tori has done well over the past few days and is remaining healthy. She also seems to be sleeping little more than usual but that is a good thing since she tends to become less agitated while she is awake.

Her home PT and ST therapies are continuing with Shawn and Meredyth coming over twice per week. We provide the PT on any other day of course. We are still trying to feed Tori each and everyday through her mouth and she can consistently eat almost an entire applesauce. She likes applesauce better than yogurt and we think it is because there is more texture to it. Tori's high school assistants made it over last Friday and worked with her a bit as well. They are also going to try and come over two or three times per week.

Tori's baclofen pump increase at the PCMC went fine and she is now scheduled for botox and phenol injections towards the end of the month. We also made an appointment with a orthopedic surgeon while we were there and have an appointment in early April to review Tori's tendon release surgery on her left ankle. We may look for another surgeon closer to home for the operation as well.

We took Tori for a drive today and also went shopping at Costco. When I asked her if she wanted to go out and that she needed to use her voice to tell me she was pretty quick to respond with an "aaahhhhh". So off we went!! Tori had a good time and enjoyed a few of the Costco samples as she normally does. She was also very relaxed this afternoon and evening and spent most of the time with us all in the family room. She really loves the beautiful and comfortable new quilt that Lauren's family made for her!! Thank you!! :-)

Another new week is upon us and we're hoping it will be a quiet and progressive one for Tori. I will also be heading to Disneyland with Brendan later this week for a little 'getaway' just for him. He deserves it as he seems to get shortchanged somewhat with our constant care needs for Tori and Whitney's various travel escapades to dance competitions. We are both looking forward to the trip!! :-)

Monday, Tuesday and Wednesday - February 26th through 28th

Hello again,

Everything with Tori is about 'status quo' lately and the only issue to report is that she seems a little more agitated at times. We've been settling her down with half doses of xanax several times per day as of late but we don't know what it means of course. Tori isn't ill or anything like that so we'll continue to watch her. Her sleeping during the night is still going well but we're still using ambien to help her a bit. She is waking up a two to three times per night 'hollering' to be changed but she is managing to head right back to sleep afterward. Not for me tonight though since this is another 3:00am update...

I finally got to meet Tori's new PT person Shawn early this week and he has been working well with Tori. He's on schedule to come to the house twice per week at this time. Meredyth also came over on Tuesday and had another good ST session with Tori. She worked on the computer for much of it as Tori created a slide show of pictures by selecting the ones she wanted. She hit the 'Yes' and 'No' switch with her right hand to accomplish this and then watched her own slide show at the end. Meredyth also used cold packs on Tori's face in an effort to improve Tori's facial muscle control. We still don't have those smiles yet...

Tori was quite riled up when helpers from the high school came over on Wednesday so nothing was accomplished. She was so agitated she was vomiting and we hadn't seen that in a while either. Tomorrow we are headed back up to the PCMC (Primary Childrens Medical Center) in SLC for a baclofen pump refill and we will also try and schedule her next round of botox and phenol shots while we are there. She is about one month overdue on those shots and perhaps some of her new agitation revolves around that fact. Her arms, wrists, shoulders and back are very tight at this time and she is probably very uncomfortable.

"Imagine that your life, like Lee Woodruff's, was perfect. You have a beautiful family, the golden horizon. For 27 days, Bob was living his dream — co-anchor of "World News Tonight." Then in just an instant, David Westin, president of ABC News, wakes her with a phone call to tell her that Bob has been seriously injured by a roadside bomb in Iraq and that there is shrapnel in his brain."

Friday, Saturday and Sunday - February 23rd through 25th

Good evening,

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

Tuesday, Wednesday and Thursday - February 20th through 22nd

Hello again,

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.

Saturday, Sunday and Monday - February 17th through 19th

Hello there,

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!!! :-)

Wednesday, Thursday and Friday - February 14th through 16th

Hello again,

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, Utah

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.

Friday, Saturday and Sunday, February 9th, 10th and 11th - Day 28, 29 and 30 in Hangzhou, China

Hi there!!!

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.

Wednesday and Thursday, February 7th and 8th - Day 26 and 27 in Hangzhou, China

Hello again,

Tori's fifth and final SCT went very smoothly Wednesday afternoon. This time it was purely a spinal injection of 10 million cord stem cells. She slept on her back for three hours afterward then woke up and watched a couple of movies in the DVD player that we positioned vertically for her. We were able to move her and elevate her head again after the six hour minimum time frame. Thankfully it cooled down outside Wednesday and Thursday because Tuesday afternoon it was quite hot in Tori's room... They did find us a fan though and it helped alot. Tori is very uncomfortable when she is hot and her body temperature seems to rise much quicker and higher than the rest of us and that tends to greatly worry the staff here.

Tori had PT Wednesday morning only due to the afternoon SCT and Thursday was a normal therapy day complete with PT, acupuncture and EMT. The PT room is now pretty busy during the morning as there are three additional patients from Hungary and another one from the USA is arriving on Saturday. All of the activity in the room seems to help Tori because she is watching everything else going on and not really focusing on what James is doing to her. Tori has alot of new friends here!! :-)

I also finally met 7 year old Maya and her mother on Wednesday. Actually, Maya introduced herself to me by walking over to me on her own and placing her 'etch and sketch' right on my lap where she proceeded to draw for me. She is a sweetheart!! :-) This is Maya's second trip and I spoke with her mother Belle(?) about her improvements. Maya didn't experience any real improvements until 2 to 5 months after her first SCT trip. Maya has epilepsy and before the SCT she was having many seizures each day. Now has has basically none and her medicine intake has been drastically reduced as well. She speaks and concentrates better and now completes puzzles that were an impossibility before. She is also stronger and she has more stamina, balance and coordination. So now Maya has returned for her second round of SCT and they are hoping for even greater progress and improvement. And now we are hoping and praying as well.

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