Tim Schmanski's blog

Monday through Sunday, December 3rd through 16th

Hello again,

It's has been a very busy past couple of weeks with the holiday season in full swing but I believe our Christmas shopping and preparation is mostly complete. Thank goodness for that!! :) Tori unfortunately became sick for a few days with some vomiting and a congested cough but she worked her way past it and is now doing much better. We presume she caught something from one of us because we all had a cold at one point or not during the two weeks. We have been playing it safe and haven't been taking her outside much at all. It has also been very cold lately with temperatures remaining below freezing.

Tori's range of motion in her arms, shoulders and legs has improved dramatically with Cari's continued PT sessions. She measured an 80 degree bend in her right knee this past week. When Tori cooperates with Cari her flexibility is fairly good but if she is not in the mood for stretching it's about impossible to stretch her due to the resistance and tension she creates in her muscles. Jake and Meredyth continue to provide sessions during the week as well. We are trying another adaptive device called the MightyMo with Tori and it is basically a Tablet PC with some powerful software installed. Hopefully it will allow Tori to select a wide variety of buttons presented on the screen. You can even attach voice responses to the selections. The Head Mouse it leverages doesn't quite work for Tori since she has to turn her head to move the mouse. I'm hoping to connect her retinal scanning camera to the system which allows her to just focus with eyes to move the mouse around the screen. I am still undecided whether she can actually comprehend the the choices presented to her. Based on how Tori responds to choices either on paper or on the computer I sometimes have no doubts and other times I am completely doubtful... So the struggle for consistent and cognitive communication from Tori continues. We will never stop trying to reach her or provide her the means to reach us.

Wednesday through Sunday, November 21st through December 2nd


The beginning of the holiday season is upon us and we made it through the Thanksgiving Day starter. We hope everyone had a nice Thanksgiving!! Our's was bittersweet and emotional as all holidays seem to be at this point... We are blessed to have Tori still in our lives but miss her lovely personality and participation nonetheless. We had a somewhat quiet Thanksgiving this year with Grandpa and Grandma Schmanski being our only company. We made the large and standard Thanksgiving Day dinner and Tori even enjoyed some very small helpings of mashed potatoes and pumpkin pie dessert. She was also in her wheelchair along side of us all during the preparation which lasted all day. She seemed to enjoy it and closely monitored everything going on around her. Perhaps someday she will be able to communicate to us all her enjoyment and we will continue to hope and pray this day comes.

Tori's health is remains good and she is continuing to have her daily therapies and educational sessions with Jake as well. We took Tori to the Shriner's Hospital for another checkup and they ordered her some new AFO's or braces for her feet. The new braces are made with a different material that shouldn't cause the pressure sores that her current ones do. They also took another set of x-rays and found that Tori's Scoliosis remains about the same though it is at 66 degrees... It is really, really curved but at this point we wouldn't want to put her through another operation to insert rod and pins to try and straighten her back. She has been through enough already... The x-ray on her hips showed they are still in the correct position even with her tendency to turn her left foot and leg inward. She will need a brace of some sort to help on this front and she will be evaluated for it when we pick up her new foot braces.

Brendan is busy with school activities and Whitney is as well along with her strenuous dance schedule. Brendan has been spending alot more time with Tori lately and we frequently find him in her room watching movies with her. This is a welcome addition of course as Tori's current condition has always troubled and confused him... We know he loves and misses her so much and I still don't quite have the heart to answer truthfully when he asks me "When will Tori be better??". "Maybe someday" is always my reply even knowing the reality that she will never be 'better' in the sense Brendan wants her to be...

Monday through Tuesday, November 5th through 20th

Hello there,

It seems like good timing to provide another update given today's wonderful new announcements regarding stem cell research combined with the fact I haven't updated in some time... For those not watching the news or reading the newspapers, there was a significant stem cell research item publicized today. I've included just a few of many, many articles below but in a nutshell they revolve around the fact that they have 're-programmed' adult stem Cells to be more embryonic like in nature without needing an egg or embryo. This is actually HUGE because it helps eliminate the whole debate around using the egg or embryo for the embryonic stem cells. Perhaps we can now get more funding towards this research without the political interference on at least this front. I still believe embryonic stem cell research should continue and without it, today's announcement would have never been made. In all reality, it will take many more advances like this to help Tori given the severity of her brain injury but one tiny, tiny step at a time I guess. There is not much more we can do other than to hope and pray advances come in time to provide Tori an improved quality of life.

Time Magazine: A Breakthrough on Stem Cells
MSNBC: Skin cells made to mimic stem cells

Tori is still doing well, remaining healthy and participating in her various therapy sessions. Nothing extraordinary to report at this time. We were able to take her to the 'Art for Heart' charity dance recital in SLC last weekend. She watched over 2 hours of dance performances without any agitation or anxiety and was fully focused on each performance. She also had some of her old dance team members visit her after the performance. She seemed to have a great night along with the rest of us.

Friday through Sunday, October 19th through November 4th

Hello again,

We are all now back into the standard routine of providing Tori's daily care and facilitating all of our other family needs. Brendan and Whitney remain heavily involved in their school activities and Whitney continues to follow her passion for dance by practicing up to 5 hours per day. In fact, Maria, Whitney and Brendan spent this past weekend in Ogden at a NYCDA competition. They stayed overnight at my brother TJ's house who lives a short distance away. The kids were able to spend some quality time with their cousins which was nice to see once again.

Tori, Tinker's the Yorkie and I spent that weekend at home where we cleaned the house and tried to relax as much as possible. Tori has remained healthy and her progress on learning and physical abilities is about the same as it has been for some time. Since her botox and phenol injections several weeks ago she has exhibited much more control of her hands and arms. We typically see this right after the injections and it eventually fades as the botox wears off. But we are taking advantage of this control and range now during her PT sessions where Tori has improved. Cari still provides the sessions twice per week and runs Tori through a full range of motions on almost all of her limbs and major joints. We also provide this exercise when we can but could probably do far better than we are currently... We try and get Tori into her wheelchair daily in the late afternoon or early evening time frame. Another nice result of the injections is that Tori can sit more comfortably in her wheelchair with her arms naturally positioned on the arm rests. Yogurt, ice cream and other soft foods are still her favorites and we typically feed her while she is in her wheelchair. She can still consume a whole yogurt with only minor or no coughing so her ability to eat remains stable with small amounts of soft food. She doesn't gag or choke nearly as often as she used to but we are still gauging just how much we can feed her without a vomiting episode which unfortunately could lead to an aspiration... It's a tight rope balancing act at all times it seems.

Friday through Thursday, October 5th through 18th

Good evening,

Maria, Whitney, Brendan and I returned from our five day stay in Boston, Massachusetts on Monday morning. We had a wonderful time and were able to reconnect somewhat even though we comprised only 80% of our family. We did alot of visiting with Guy and Sophie, site seeing, shopping, eating, sleeping and eating some more... ;-) I'm also happy to report that Tori did absolutely great during our absence and gave Grandpa and Grandma Schmanski ad Moira her nurse very, very little trouble. We had emergency plans prepared just in case and thankfully we didn't need to use them.

Tori only needed medication to ease her anxiety and agitation at times and that is nothing outside of her normal routine. Grandma and Grandpa were able to provide this for her as well as her daily care and feeding pump preparation while Moira came to the house twice per day to administer her daily doses of medication. We also had the video camera configured so we could watch Tori from my computer in Boston. We were able to determine what medication to give her at certain times to calm her agitation. Meredyth also came for Tori's ST sessions and Cari for her PT sessions while we were gone. All in all we don't think things could have gone any better!!! :-) We were able to relax a little more after the nervousness passed during our first couple of days and nights away. We did check in often though.

The Friday before we left Tori received her botox and phenol injections throughout her upper body and arms. By the the time we left Tuesday afternoon the botox had taken effect and Tori was a much more relaxed and not agitated person. We really couldn't have left her without her getting the injections. Now she can sit in her bed or wheelchair comfortably with her arms relaxed and laid across her lap. It's a marvelous thing even though it is such a simple task!!! If Tori ever gains immunity from botox we will be in big trouble...

Since we have been back Tori's demeanor has remained relatively calm and relaxed. Grandpa and Grandma headed south to the warmth of Mesquite, Nevada to take a well deserved break. Thank you both so much again for providing our family this opportunity!! We are now back into our 'normal' routine of caring for Tori and her siblings and doing our best to keep the household running. I'll also be meeting with Tori's school counselors next week to determine a learning plan for her. We'll see what we can come up with.

Monday September 17th through Thursday October 4th

Hello again,

I apologize in advance for yet another long overdue update... Tori is currently in dire need of the next round of botox and phenol injections as her arms, shoulders and upper back are very, very tight and uncontrollable at times. Thankfully she is scheduled for the injections on October 5th. As I mentioned in the the last update, Tori has the tendency to raise her left arm and hand over her head when she is agitated or uncomfortable which is now quite often. Many times she lifts her poor left hand right into her mouth which where her teeth continue to cut up her hand of course... Primarily her left pinky finger which is now constantly bandaged as we try and heal it up. We have resorted to placing and sometimes taping an oven mitt on that hand to prevent further damage. She can raise it and get it in her mouth faster than you can imagine... Maria also had the unfortunate experience of getting her finger caught in Tori's mouth during an agitated phase and Tori clamped onto it and wouldn't let go. Thankfully Whitney was home at the time and heard Maria screaming then helped calm Tori enough for her to let go... Not really fun times...

Another issue we are closely watching is the fact that since Tori's tendon release surgery on her ankles her feet are now both twisting and almost laying flat towards the right. It seems to be originating form her hips and her left knee continues to be hyper extended. We will need to get some guidance on those issues from the Orthopedic physicians and the Shriner's Hospital. We also need to get her AFOs resized and refitted during that visit aas she cannot wear them in their current state.

Alright, that is enough of the bad news... On the good news front, Tori has a new PT (Physical Therapist) named Cari who is visiting twice per week for just over an hour. She works very well with Tori and focuses on Tori's entire body. She is certainly the best PT we have had in the home working with Tori. Sure, she makes Tori scream at times much more than Maria and I would but it is dearly needed. She has already improved Tori's range of motion in many problem areas like her shoulders, elbows and knees. Tori's wrists are still very tight and she resists the stretching of her fingers and thumbs the most... Tori is exceptionally strong. If she doesn't want you to move anybody part she can halt it as needed. That is why it is so important to get her interaction and hopefully relaxation during the stretching.

Wednesday through Sunday, September 5th through 16th

Good morning,

Time seems to be flying by and summer is officially over unfortunately... Most of Tori's wounds on her feet are now healed and her feet are looking almost totally normal. We now need to get the AFO's re sized a little so she doesn't get the pressure sores. Tori's health, anxiety and behavior has been pretty stable and consistent since my last update though she is about due for another set of botox injections. We can tell because her arms and shoulders are tightening up again and she is beginning to raise her left arm up over her face more frequently. When she does that she also has a tendency to put her hand and fingers in her mouth and she currently has some cuts and scrapes from doing so.... We are trying to schedule for more botox during the beginning of October.

Brendan and Whitney are well into the school year now and are enjoying it for sure. I have been traveling a little more lately for work which is always keeping me busy and Maria continues to provide daily outstanding love and care for Tori. Maria's mother, Grandma Harris, also has been spending most of the days during the week at our house helping out as well. She typically leaves home for the weekend and we greatly appreciate her love and support!! Thank you Grandma Harris!! :-) My parents, Grandma and Grandpa Schmanski, should be arriving from their summer visiting of family later during this week.

Thank you all so much!!

The Schmanski Family

Tim, Maria, Tori, Whitney and Brendan

Monday through Tuesday, August 20th through September 4th

Hello again everyone,

Tori is now finally cast free!!!! :-) She had them removed last Tuesday and did re markedly well during the cast cutting procedure. Her feet look much, much more natural but they have really been hyper sensitive since the removal. But they are finally becoming less so at this time. She also had her new AFO's (Ankle Foot Orthosis) placed on her feet. They are basically plastic support 'shoes' that help keep Tori's feet aligned and prevent them from going back to how they were. She will need to keep them on as much as possible. Tori was in a alot of pain and discomfort about 3 days afterward and we finally removed the AFO's only to find some pressure sores.... So we have had to keep them off for a while now as they heal. We also put Tori in her wheelchair, leaned it way forward and placed her feet in a large bucket of hot water and Epsom salt. We soaked them good and Tori loved it!! Her dead skin was just layering off of her... She still has some sores from her skin being stretched so far as well but they are beginning to heal.

Other than that Tori is doing pretty well. She is eating plenty of yogurt and 'Dippin Dots' ice cream. She is spending her afternoons in her wheelchair as usual and is back to being rarely agitated. Meredyth continues to come and complete ST sessions twice per week with Tori who does well on the majority of exercises.

There was a great NBC news video on Brooke Barels trip to Hangzhou, China. It was really nice to see all of the friendly faces of of the SCT staff at the hospital and of course we wish Brooke and everyone else going through SCT the best. Here is Brooke's website as well. Here is an LA Times article on Samantha Palumbo which is another great and inspiring story.

Saturday through Sunday, August 11th through 19th

Hello again,

I can't believe it has been 9 days since my last update?!?! My apologies again... The summer days seem to be just flying right by us all. Tori continues to remain healthy and is in good spirits the majority of the time. She still has her moments of agitation but they seem to be less frequent as before. We continue to treat her agitated states with xanax and zanaflex which typically calm her down in about 15-30 minutes afterward.

There was another nice article called Utah families encouraged by stem cell treatments in the Daily Herald newspaper that focused on Tori, Travis and Dena who all have been to China and back for SCT. Please offer your thoughts and prayers to them all as they continue their recovery journeys.

We have been making a focused effort lately to get Tori out of the house as often as we possibly can. She has been so calm and attentive while out lately and she certainly soaks in everything going around her. We took her to the new IKEA store in Draper last weekend for several hours and she did wonderfully. She saw Shrek 3 this weekend and we also went to the Gateway Mall in Salt Lake City for an entire afternoon. While there we also visited a Children's Discovery Museum that kept Tori, Whitney and Brendan entertained as well. Guy set up a large set of PVC piping pieces strategically placed on a magnetic wall so a plastic ball could travel downward through all of the pieces. Tori could track that ball through the whole process with ease. I'm sure if she could she would have told Guy how to place the pieces correctly as well :-) We then ate at z'Tejas and even got rained on a little bit before we left. Tori also went to the Training Table restaurant as Guy's pictures prove. It is also always nice to hear from people who know of Tori's Story and have followed this site closely. As I passed by a table a young couple asked me if that was Tori and told me they have been following the site for a long time. So after they finished eating they stopped by our table and were introduced to Tori. We thanked them for their support and generosity and gave them some Pray4Tori bracelets as they departed. For all of those living locally please, please don't ever hesitate to introduce yourselves to Tori and our family if you happen to catch us while we are out and about. Your love, prayers and support means a great deal to us all and hearing how Tori has touched your lives is very important to us as well.

Tuesday through Friday - August 7th through 10th

Happy Birthday Tori!!! We love you!!!

Yesterday was Tori's 17th birthday and we decided to keep this one close to our family and some of her good friends. We didn't have any party or anything of that nature. Holiday's and special occasions like this are always bittersweet of course and we do our best to balance happy and celebratory thoughts in our minds over the saddening ones that are always present as well... Honesty, it's a very tight line to hold sometimes... But at least Tori is still here attempting to celebrate with us and that in itself is a miracle and a blessing.

We did manage to take Tori to the Macaroni Grill for dinner with Grandma Harris, Maria, Whitney, Brendan and I. Tori did well but decided to try and take a nap in the loud environment and eventually she had a small startle seizure... Jake stopped by unexpectedly with a bouquet of wonderful flowers during the day and Tori was happy to see him once again. Thank you very much Jake. Marilyn and McKenzie stopped by and visited for a while and later in the evening several of Tori's good friends came over to wish her a happy birthday. In addition, Mike and Linda Newsome paid a pleasant visit as well. Once again, thank you to all who came and to those who posted on Tori's site for greatly helping keep our thoughts on the happy side of the line!! :-)

Tori did pretty well with Meredyth this week during her ST sessions. Movie trailers was a theme in one exercise with some extreme sucker manipulation and usage as well. Tori continues to sleep comfortably and well during the night and spends the afternoon and early evenings in her wheelchair with the rest of us. Much of that time is outside on the deck where she watches Tinker's intently and often takes a nap.

There was more good news on the stem cell research front and it involves Neurons which are most important to Tori and her injury. Here is the article:

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