My name is Lorraine Weil. I too have a daughter who sustained a brain injury (Nov. 11, 2003). I'm in the process of making arrangements to take her to China and have many, many questions. First of all, how and why did you decide on Hangzhou Hospital. I was only given an option for Beijing Tiantan Puhua Hospital through the stemcellschina.com "contact us" link. Yet everyone I read about is going or has gone to Hangzhou. I've been reading your webpage for about a week and a half now, so I've pretty much scoured it completely and still have not been directed to the hangzhou facility. Thanks for taking the time to read this; hope to hear from you soon. God Bless You All! I'm glad Tori is doing better and I'll keep her in my prayers. If you'd like to see my daughter, she can be found on www.caringbridge.org/visit/shawnaweil.

Lorraine Weil
lorraine61657@verizon.net

Hello again everyone and Happy Easter!!

It's been a week since my last update so prepare yourselves for alot of positive reading on Tori!! :-) Tori's Botox fully set in last week and that combined with her recent Artane medication increase for muscle tone has made her a completely different girl!! A far, far less agitated and mostly calm and pleasant girl that is which is of course wonderful for all of us to experience again. She still has a little agitation each morning after her typical great night of sleeping but she is now calming quickly and it does not last all day as before. Besides that her vomiting has almost completely stopped once more!! Her whole upper body and arms are visibly more comfortable and she is once again moving them freely and placing them basically where ever you ask her to. You can also stretch her arms and hands once more as the tightness is greatly reduced. It is really, really nice to this once again and Tori even tried to reach into her Easter Basket this morning.

Since her arm and hand control is back to what it once was Tori is also able to participate much more in her ST, PT and Megan visits. Meredyth came over twice this week and Tori did very well answering questions with precise selections using her right hand on the Yes/No switch. Again, it's basically a large switch with two 4"X6" buttons labelled "Yes" and "No" and when either is pressed a voice pronouncing "Yes" or "No" is heard. Meredyth was holding up cards with the name of a month on it and would try and trick Tori. She would hold up the "May" card and would ask Tori if it snowed in May to which Tori would press the "No" button. Tori informed Meredyth that Santa Claus doesn't visit in "July" and that the trees do loose their leaves in "October". She also worked on some simple pictures with Tori and had her trying to make sounds once again. She is getting better but it is very slow moving progress... Megan had long question cards which she would read to Tori with incorrect and correct words inserted within the sentence. Tori would have to choose the proper pronunciation when the correct word was inserted. Tori did reasonably well with this challenging exercise and Megan will be bringing more fun and games next week.

Hi Tori, Tim & Family, I don't know if you practice any particular religious faith but just some thoughts if you have Catholic roots. Personally, I was born in Poland and raised in Holy Name of Jesus Catholic Church in Stamford, CT. Even if you're not Catholic, you may know, today, April 2nd, is the 2nd anniv. of Pope John Paul II's passing. Maybe you've heard the story of a French nun, Sister Marie Simon-Pierre? She had the same illness as the pope, Parkinson's disease, and her physical health was steadily declining when she and her community (Little Sisters of Catholic Motherhood) began praying to the pope after his death, and she was miraculously cured. Her experience may be deemed a true miracle by the Catholic Church in their consideration of beatifying JPII for sainthood. Have you all considered praying to Pope John Paul II for his guidance in Tori's recovery? Hope Brendan enjoyed his 6th birthday celebration. Take Care. Blessings, Mary

hello, my name is amy stockton. My ten year old son suffered a severe traumatic brain injury on october of 2005. He had his head run over after falling from a haywagon at a sunday school party. Our Motto in my hometonw is PRAY FOR KALEB OWENS. I came across this site recently when i was searching for stem cell research. My son lays in a minimally conscious state. I have been all over trying to fin help for him but have come across nothing that made him very responsive. I would like to know how your trip to china went and if it was what you were expecting?

you can visit my son's website
www.caringbridge.org
click on visit a site and then type in "kalebowens". I am touched by your story and was hoping you could share some of your information.

Sincerely,
Amy Stockton
p.s. I am having troubles figuring our your website, could you tell me how to get to the post of your experiences after china?

Good afternoon,

Our trip to the PCMC (Primary Children's Medical Center) in SLC went well Thursday morning. Maria, Brendan, Tori and I arrived just after 9:00am and Tori went in for her botox and phenol injections at 10:00am. They sedated her first then gave the injections to her wrists, forearms, biceps, shoulders, neck, pectorals and throughout her upper back. She came out after 45 minutes and spent almost another hour in the recovery room while her sedation wore off. So we loaded her back into the van and headed home so Maria and Brendan could celebrate his 6th birthday in a little better fashion by going birthday present shopping :-) He enjoyed the day much more upon returning home.

We were a little alarmed when they weighed Tori and she came in at 96lbs... We don't trust those bed scales that much but we knew she had lost some weight after staying relatively steady at 105lbs for so long. Her feeding routine hasn't changed in some time and we are wondering if the increased muscle tone, agitation and sweating during the past couple of months caused her to burn far more calories than usual. She gets 2000 calories per day through seven 8oz cans of Jevity 1.2 liquid nutrition and that is well within bounds for her age and weight. We will probably try and give her an extra can a day for a while which will give her almost an additional 300 calories per day.

Tori has definitely been sore for the past few days but her arms are thankfully so much looser and easier to move than before!! We also bumped up her Artane prescription to 8mg per day from 4mg per day. We are going to be aggressively raising the Artane intake by 2mg per week until we begin to see some results because right now I don't think it is reducing her muscle tone at all... We've been giving Tori Tylenol for her pain and she was running a slight fever Thursday and Friday nights.

Megan from Timpanogos High School stopped by and Tori had a good session with her. Megan had cue cards with sentences on them and would read each sentence to Tori then hold the cards up and ask a question about one the cards and Tori would respond by looking at the appropriate card. Tori got about 8 out of 10 correct. Meredyth also had a positive ST session with Tori as she was making "aaaahhh" and other various sounds. Meredyth continues to focus on improving Tori's tongue and mouth control by doing numerous exercises with her.

Hello again,

It is certainly time for another update and I'm happy to report that Tori had a pretty good weekend as she was far less agitated than she has been lately and it was a welcomed change. She spent much of her time in her wheelchair hanging out in the family room area. We also took her out on the deck and did a Sunday drive around Orem which she seemed to enjoy as well.

Tori is sleeping exceptionally well and her routine is very stable at the moment. Our goal each night is to give her all of her medications at 10:00pm and to refill her food pump for the night. Tori is still drip feed 110ml per of liquid Jevity 1.2 through her G-Tube. After her medications it usually takes an additional hour before she begins to sleep. We haven't had to give her any Ambien to help her sleep for several weeks now. Tori will then call for us two to three times a night so she can be changed and typically goes immediately back to sleep. Tori then wakes up anytime between 8:30am to 9:30am.

Tori's high muscle tone is still very present but tomorrow is thankfully botox day!!! :-) If you want to somewhat experience what Tori constantly feels flex the muscles in your arms, shoulders, back and neck in an 'Incredible Hulk' type pose for a minute or two. Then imagine doing it non stop for about 14 hours straight which is about how long Tori is awake each day. Not pleasant I guarantee you.... With the botox and phenol injections strategically placed in those major muscle groups Tori's tone will be reduced and her comfort level will be greatly improved.

Tori's PT and ST sessions were cancelled Tuesday because she decided to do some projectile vomiting in the afternoon when they were scheduled... So the therapies will continue during the rest of this week.

Thank you for your support!!

-Tim

http://www.lauralaughlinl6.org/

Hello all,

The trend with Tori's high muscle tone and frequent states of agitation and discomfort continues... I believe we are in for another full week of it until she gets her botox and phenol injections. We are trying to counter her mood and pain with small, but steady zanaflex and xanax doses. At least she has kept her new G-Tube in up until now.

Meredyth went on a vacation this week so Tori hasn't had any ST sessions and she has had only one PT session to this day. Her last one of the week is scheduled for tomorrow. The weather has been pretty nice here this week so Tori has spent alot of time outside in her wheelchair which she really enjoys. I have been stretching her arms while she is in her wheelchair and she has been raising them in front of her, to her sides and somewhat over her head when I demonstrate the movements for her. It is hard for her given her muscle tone and her arm control isn't as well as it normally is either. Once the injections are done I am sure much of her control will return.

I have spent most of my time this week working between Orem and SLC for the Novell BrainShare Conference. I've had to race back and worth to pick Whitney and Brendan up from school and I'm thankful the conference ends tomorrow. Maria and Whitney are in Bountiful tonight for a dance competition which will run the next three days. So they will be travelling alot as well. All of us can get back to the more 'normal' routine next week!!

And that is the short update for today. Thank you for all of the love and support,

-Tim

Hello again,

It has been another hectic week and here is another delayed update because of it. It has been very challenging lately as work is extremely busy and demanding and I am spending much of my time just trying to keep up with it all. Of course I could also spend every single day solely dealing with all of Tori's insurance, home care, health care and lawyer issues... It all just seems so overwhelming and never ending at times... But, we just have to take it day by day and try to get as much accomplished as we possibly can though I don't think we can ever be 'ahead'.

Tori's muscle tone is about as high or tight as it has ever been and unfortunately it continues to make her miserable... We have her on steady doses of zanaflex to relax her muscles and xanax to calm her agitation. We rescheduled her botox and phenol injections for March 29th so we are going to have tough it out for another week and a half. I guess I should say that Tori will have to tough it out for that time... Her right arm is so tight that when she scraped it across her stomach she actually pulled her GJ-Tube out of her stomach... It came out about two inches but it was probably still place able. So I gave her some medication to calm her and when I came back to see if it had taken effect she had pulled the while thing out. So I put in the new G-Tube we had as a backup and so far she has left it alone. Her arms are also bruised up from striking the rails on her bed. No matter how many pillows we stuff around her she always finds a way to knock them all off the bed and onto the floor. She also continues to draw her left hand and fingers to her mouth and cuts them up with her teeth. She was almost totally healed up but now there are a few more cuts to deal with...

All of us and Guy went to the Macaroni Grill for dinner Thursday night and had a good time. Tori behaved as well and she had some small samples of pasta, cheese, ice cream and cheesecake. Whitney went to Denver for a dance competition this weekend and I spent most of my time in SLC at the Novell BrainShare Conference which we are servicing. I'll also be up there pretty much all this week as well.

Good evening once again!!

Thank you for all of the concerned emails asking how Tori was doing and why the Pray4Tori site hasn't been updated as it normally is. It is quite obvious that there are many people checking Tori's updates on a regular basis. Tori is healthy and doing well and the main cause for delay was that Brendan and I have been at Disneyland since Friday night. We returned very late on Monday night and had a great three days in sunny California!! :-) We missed the rest of our family of course and maybe someday we can all go together once more. Maria, Whitney and the biggest Disney fan Tori were always in our thoughts.

Maria and Whitney held down the household and cared for Tori while we were relaxing. Tori remains very, very tight and we are attempting to move her botox and phenol shot schedule sooner. Shawn and Meredyth continued their PT and ST sessions with Tori. Meredyth assisted Tori in creating a colorful spring flower on paper and Tori choose all of the colors used. Tori did more work with the Yes\No switch as well and today they worked hard on trying to use a straw and a horn once more. If Tori can control her airflow in that fashion it will open up many other therapies and exercises we can try.

Tori has also been very vocal recently which we take as a very good sign. She will 'call' you at night if she needs to be changed, needs another TV channel or just wants some company. We are also doing our best to try and make her vocalize when she needs sometime. Practice, practice and more practice I guess. She may get tired of this approach and block us out but we'll gauge that when it occurs.

Tori, Maria and Whitney had numerous visitors over the weekend as well and it was nice enough outside on Saturday for some time on the deck. Even though Maria used sunscreen on Tori she did get a little burnt on her legs and neck. She looks like she caught more sun than Brendan and I and it was 90 degrees at Disneyland!! ;-)