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.
Our local newspaper had another article on Tori and her progress. Here is the link:
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.
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.
Bonjour everyone, it has been a while since pray4tori.com required so much attention.
Someone took advantage of our site to do fraudulent activities online which required me to spend the last 4 hours updating a lot of software on it.
There is no way to tell what I have possibly broken right now but at least it seems to be back online. We will continue to monitor and stabilize the new version over the next days.
-Guy (going to bed)
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.
The Schmanski Family - Tim, Maria, Tori, Whitney and Brendan
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....
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.
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...