Tim Schmanski's blog

Happy 18th Birthday Tori!!! Thursday July 31st through Sunday August 10th

Happy 18th Birthday Tori!!!

Tori had her 18th birthday on Saturday and she had many visitors to the house over the weekend in addition to well wishing phone calls, cards and emails. Thank you all so much for remembering and caring!!

Tori received some nice gifts but more important was the well deserved and wonderful attention from her friends and family. Tori is certainly aware of everyone around her and when her friends are present she always tries to vocalize much more than normal. The highlight of the weekend was seeing Tori smile once more as she had her great friends McKenzie and Angel conversing with her. It has been a while since we have seen one and we can still count all of them we have witnessed on one hand... That is why her smiles mean so much to us and the only time Tori delivers a smile is when her friends are surrounding her. There is ZERO doubt in our minds that she is fully cognizant of those around her and her behaviors and actions in certain situations clearly demonstrate this.

Tori is now in dire need of her botox and phenol injections and thankfully she will be getting them this Thursday. Her upper extremities are very, very tight and uncontrollable at this point and Tori is definitely in more pain because of it all... We have to schedule Tori for anesthesia for the procedure which is what caused the delay since it was the first available opening they had at PCMC. She will end up being around 3 weeks over the 3 month milestone where she can get more injections. As stated before, it is crucial to wait at least 3 months between injections otherwise Tori's body will adapt to the botox and it will no longer be effective. We certainly don't want that so we will deal with a few extra weeks overdue.

Friday, June 20th through Wednesday, July 30th

Good evening,

I'm well past due for another update so here we go!!

First off on the stem cell research front there have been a slew of new and promising discoveries and here are just a few that caught my interest:

Adult Stem Cells Activated In Mammalian Brain

Spinal Cord Stem Cells Could Be Basis Of Nonsurgical Treatment For Spinal-cord Injuries

Adult Stem Cells Reprogrammed In Their Natural Environment

Understanding How Neurons Communicate May Help Treat Brain Disorders

I am still very convinced the use of stem cells will eventually revolutionize the practice of medicine as we know it today. It's only a matter of time.

Tori's summer as well as ours seems to be going by very quickly but all of us have been enjoying it. Tori is spending as much time as possible outside on our deck primarily in the afternoon when there is shade. She has a great view of the mountains and of all the other activities going on in the backyard.

Tori's PT and ST sessions with Cari, Meredyth and now Christi continue each and every week. Tori has remained healthy with basically no illnesses now for many months. Her height is now estimated at 5'9" or 5'10" and her weight has been steady around 125lbs. She is certainly much harder to move around now so we are investigating means to help with that issue. Presently her muscle tone is quite high as her quarterly botox and phenol injections are two weeks away. So she is a bit uncomfortable at times and frequently gets her hand and arm in and around her mouth and over her head as well when she is agitated. We will just have deal with this phase for another two weeks until the injections are completed.

Wednesday, May 28th through Thursday, June 19th

Hello again,

Today marks three years since Tori's injury and it seemed to have much less prominence in our thoughts as the previous two anniversaries. Having it not fall on Father's Day also helps keep that day celebratory as it certainly should be and it surely was this year.

Tori has been through a lot over the past three years and has certainly made progress in her recovery. It has been painfully slow and we have encountered numerous challenges but we continue to try and move her forward as best we can. Keeping her as healthy and comfortable as possible remain as top priorities as well and we have been blessed this past year as Tori has not had a serious illness. Again, we remain committed to caring and helping Tori in every way we can and we will never stop trying.

I described trying times for Maria and I in my last update primarily due to the fact that Tori should have and would have been thoroughly enthralled with life having her high school graduation, college preparation and basic entry into adulthood in full swing. It would have been truly exciting times for our entire family as well.

Saturday, April 19th through Tuesday, May 27th

Hello again everyone it's been way too long since my last entry...

Tori is doing well and there are no issues with her to report. Her daily routine continues with various therapies throughout the week and it is finally getting warm enough to bring her outside again. She is spending more and more time now outdoors on our deck. We will also begin getting her out and about more on shopping trips and excursions to movies and the like. Tori still loves the summer just as she always has!!

The past couple of months have certainly been more challenging and difficult for Maria and I in relation to Tori. Seeing and sharing with all of her friends who are graduating from high school, from their various dance teams and seeing them carefully planning their entries into adulthood makes us realize just how much Tori, and all of us, have lost in this life... The college offers also continue to arrive during the week but I don't have the courage to respond that Tori will not be attending. I just can't. It seems lately the emotional ups and downs are in their vicious cycle often and all we are trying to do is remain as steady and as focused as we possibly can without dwelling too long at either end. All we can do is attempt to manage the loss, pain and sorrow that is always present and always will be.

Wednesday through Friday, March 12th through April 18th

Good afternoon,

Tori’s health and overall demeanor remain well and her daily routine of home health care and therapy sessions continues. She is now fairly consistent in her whistle blowing and Meredyth has been working with Tori to make her exhale more forcefully for increased loudness of the whistle. This may prove meaningful in the future because it could possibly lead to a form of communication where Tori would rely on a whistle to garner our attention. Whether she has the cognitive ability to achieve this action remains in question but we have to keep trying for any consistent communication medium to truly know. All of us want to believe in Tori and hopefully there will come a day when she will prove to us what she truly knows and can do.

Cari did some more range testing on Tori’s joints and limbs and recorded her best measurements post the China trip in January of 2007. The continuous PT sessions and efforts are working and it would be wonderful to get her the levels achieved during her 32 day stay in China where she received 2 hours of PT and acupuncture each day. Definitely progress on this front!!

Jake continues to visit Tori for three days a week and does various activities with her. I’ll provide a more detailed description of those in the next update but most are classroom centered whether it is French, comparison activities in math and English and Tori’s favorite fashion.

Tori in the news

Our local newspaper had another article on Tori and her progress. Here is the link:


Monday through Tuesday, February 18th through March 11th

Hello again,

For all of those still questioning or not quite convinced on the promising future of stem cell usage please watch this video: A 2-year-old showed fewer signs of cerebral palsy after an infusion of his own stem cells Whether using your own stem cells or those of others the extensive research and eventual clinical evidence will validate their use in medical treatments. For all of those having children please try and store the cord blood stem cells if you have the means. You can never know what obstacles and challenges life will hand you.

Tori blew her whistle today during her ST session with Meredyth and she did it several times and rather loudly each time. I actually thought it was Brendan playing with a whistle until Meredyth called me into see Tori try it. She clearly did the best she has ever done with this exercise and it also reminded me that I haven't posted an update on her in a while... Sorry about the dry spell but here I go now.

Cari has also been having very good PT sessions lately and Tori has 'loosened up' once again since the sessions are now twice per week as before. I am seeing a 90 degree bend in Tori's right leg and her left leg is improving as well. You can really see the difference when she is in her wheelchair and her legs are now bending at the knees instead of remaining straight as an arrow.

Jake continues to do great work with Tori and his latest teaching exercises involve watching and reading short stories on the computer. I haven't had a chance to witness this exercise but Tori pays very close attention to the reading (with words on each page) and the page turning. It can keep her attention for a full hour which is quite good for her.

Monday through Sunday, January 28th through February 17th

Good evening,

Thank you for your patience and for the many emails informing me that Tori's site was down. As Guy mentioned in his earlier posting to the site, there were some unscrupulous and malicious individuals who exploited Tori's site for fraudulent activities. It saddens me to know there are truly pathetic people out there trying to take advantage of not only Tori's site but many others just like it... It has been a long, long time since I have approved any new users to Tori's site and that it is due to actions like this. It will take a personal introduction email to me after applying for an account before access will even be considered. So once you apply for an account you will need to reply to the email which is automatically sent to you with information about yourself and why you want to participate on Tori's site. I'm sure there are many more of you who would like to contribute and this is an unfortunate precaution that must be taken. Now onto what this site is all about - Tori.

Tori continues to do pretty well but has had a few 24 hour flu type days since the last update. Slight temperatures, some vomiting, agitation and just feeling miserable like all of us feel when we are ill. Tori likes it about as much as we do... Maria, Whitney, Brendan and I have all fought through the same symptoms at times during the past three weeks as well. I'm happy to say that as of right now no one in the family is ill and we hope it remains that way.

Monday January 7th through Sunday Januay 27th

Hello again and I know it has been way too long since the last update...

Tori has has been doing well and hadn't been sick until the past several days... She had flu like symptoms and stomach issues for about 2-3 days. She had a 103 degree temperature at one point and couldn't hold any of her liquid food down. She vomited often and may have aspirated some of it as her blood oxygen levels dropped into the high 70's and low 80's range. So we had to give her some extra oxygen over those days to help keep her in the lower 90's. We also used pedialyte to keep her hydrated during this time. The worst is now over as she is off oxygen and bad to her normal feeding levels. She looks and feels much better than she did. We don't quite understand how she became sick because none of us has really been sick so far this year. As far as we know none of her therapists or any of her visitors were sick either. It seems this is the season for issues like this no matter how cautious you are.

We also took another trip to the Shriner's Hospital in SLC last week to have her feet casted again for new braces. They should be much softer than her current set which give her pressure sores after being on for only a couple of hours... The new ones will be read in a few more weeks.

The company I work for was acquired at the first of the year so now we have new insurance company to 'break in' regarding primarily Tori and her care of course. Plus I am spending alot of time trying to close out all of her pre 2008 medical bills and the like with her past insurance companies. It is a never ending and constant battle to say the least... Hopefully our new insurance will be cooperative and easy to work with but time will tell.

There not too much else to update on at that this time and we greatly appreciate the continued prayers and support for Tori and our family.

Thank you,

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

Monday December 17th through Sunday January 6th

Good evening!!!

We survived another holiday season but it certainly had its highs and lows... But there was more joy than sorrow this year and we are looking forward to a positive 2008 for Tori and our family. Tori has done very well over the past three weeks and we have kept her active and busy in all of our family gatherings. She was in the kitchen for our annual family 'cookie bake' get together and she enjoyed watching and helping (by sampling) everyone make Christmas cookies. She also made the trek up to my brother Todd's house for Christmas Eve family activities. In all there were eighteen of us including Grandpa and Grandma Schmanski. The road home was a little scary though as there was massive blizzard hitting the area but we made it safely without any incidents. Here is a nice picture I posted of Tori by a Christmas tree.

Tori continued her partying ways and was also out with Maria, Brendan and I as we celebrated New Year's Eve at our good friends Mark and Julie Depalma's house in Payson. We brought our dog Tinker's to both the Christmas activities and the New Years activities but she enjoyed the latter more because there were four other dogs to celebrate and play with :) Tori certainly liked watching them all scamper and chase each other around the house that evening.

We are certain Tori did alot of snacking during the holidays because when we weighed her at the PCMC this past week she came in at a very solid and healthy 113.2 lbs.!!!! Prior to her injury she was always very strong because of all of the dancing she was involved in. Her upper body remains very muscled but it is due to her spasticity and tone at this time.... She was at the PCMC for her quarterly doses of phenol and botox into her arms, shoulders, chest, neck and back. She was in dire need of the injections once again as she was extremely tight and had zero control of her left arm and hand which she bite several times... We hope and pray she will never gain immunity to botox because that would be really, really bad....

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