Brendan at Disneyland with Tori close in his thoughts. He was always eager to declare "Tori is my big sister!!" when people asked who she was.

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.

Tim,

Have you ever looking into Advanced Bio-Mechanical Rehabilitation (ABR). The nearest clinic is based out of Montreal, but they do satelitte trainings in the US. Our son has a baclefin pump and we have been able to reduce the dose 120 micrograms since starting it with no increase in tone. I also know many families who have avoided surgeries like the tendon lengthening. If you want to learn more visit www.blyum.com or www.abrcanada.com or email me.

I am glad to hear about Tori's progress and am exploring the stem cell option. You are in our prayers.

Mandy Arrowsmith
Peach Bottom, PA
Mom of Jonny, 6, who has TBI from a car accident 3 years ago.

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!! :-)

Bonjour everyone, Tori's site just received a pretty significant system upgrade. After a quick tour, it seems every still works properly.

Please report any issue you may find to admin @ pray4tori.com or leave us a comment here.

Thanks,
-Guy

Hi Tim,

Finally had a few minutes to send a note. I check your website daily, sometimes twice a day. Your family has captured my heart and are in my daily prayers. THANKS for all the updates. I loved hearing what was going on in China and of course, was learning from you for possibly treating Samantha with stem cells also. I'm considering going to the Dominican Republic for fetal stem cells with an American Doctor from Malibu. My friend with a 15 year old with severe TBI just got back. Also, have to comment on my reaction to Bob Woodruff. Saw him and his wife on Oprah on Tuesday and was in complete amazement that he is sooooo back to normal in every visible way. If he has any lasting memory or cognition issues, it sure doesn't show. In watching, of course I too related to every detail they shared about those days in ICU and coma and didn't realize that I was re-living it inside. And then the HUGE disappointment flooded me that Samantha didn't open her eyes one day and say, "Hey Mom where have you been?" like he did to his wife. His recovery was exactly what I wanted for my daughter and was deeply hoping for every minute of our journey. To see how it actually could have happened for us totally overwhelmed me. I had the biggest meltdown I've had since Sami's accident in April 2005.
After I pulled myself out of my sorrow pit somewhat, (still trying to get back in control emotionally), I feel excited that we have someone who will bring TBI to the forefront of the news. Public awareness will help us all so much.

Well, primarily wanted to just say hello and thank you for the excellent and detailed updates that I, for one, am learning from and that help keep Tori in my heart and prayers.

in His love,

Diana Palumbo...Samantha's mom

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."

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.

http://chrisbarnes.blogharbor.com/

http://www.justiceformichael.com/index.html

http://www.getwellkathleen.us/index.htm

http://www.debbierich.com/

The Schindlers Foundation may be able to provide additional resources and support as well.

http://www.terrisfight.org

Best regards,

James

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

While looking for an old picture, I stumbled upon this photo of Tori... Here is a smile for you Tim and Maria.

Love,
-Guy