Thank you so much for being so open with Tori's experience. It has given me hope as the mom of a very sick infant. Tori has touched everyone's heart but the support for her and your family is so wonderful! If you get a chance please visit our son's website.

http://www.danielshope.com

Again...thank you!

Connie

Good evening,

Happy Mother's Day everyone!! Especially to all of the mom's out there of course :-) Tori and the rest of us had a nice and relaxing Mother's Day and we ended up going to the Macaroni Grill for dinner with Grandpa and Grandma Schmanski, Todd and Laurie and kids and Guy. It was enjoyable and Tori ended up having bread pieces dipped in vinegar and oil, masked potatoes, some pasta and a little ice tea as well. Still very, very small amounts mind you but at least she is sharing in the eating experience with the rest of us and all of us feel just that much better when she is participating. She was very calm, aware and attentive throughout the long dinner.

Meredyth and Tori had two ST sessions this week and Tori was very active in them once again. Meredyth was using various Star Wars flash cards and was asking Tori numerous about the characters and the movies themselves. Tori was correctly selecting the answers by looking at the correct card. She also seems to be blowing the whistle more consistently when asked and is much more comfortable placing her lips around it so she can blow it. As soon as she masters blowing we'll try the straw again. Still no word on the new PT sessions so we are trying to stretch her ourselves as we can. I'll have to call this week and see what the delay is in getting them approved...

Tori's surgery to replace her baclofen pump line and place the catheter higher on her spine will happen sometime on Wednesday. We are currently unsure if we are spending the night at the PCMC or not and it will probably depend on when she actually goes in for the surgery. Then on July 10th she will have the tendon release surgery completed on both of her ankles at the Shriner's Hospital in SLC.

We had a visit this week from 3 year old Samuel and his mother Teresa Jewkes who are in town during the week for about a month as Samuel is trying some new rehabilitation. Samuel had a near drowning exactly one month after Tori and both of them spent the next many months in the PCMC. We became good friends with Teresa and Tom and have remained in contact. Samuel and family are doing well and Teresa remarked how well Tori looked since the last time she saw her in person. That was probably 15 months ago or so. Samuel has a carepage at http://www.carepages.com. Search for Samuel Jewkes and I believe you will need to create an account. Teresa will be launching another web site for him shortly.

Hello again,

It has been pretty steady and stable with regards to Tori lately. She has been sleeping very well during the night and has generally been calm and in good spirits during the day. Her eating continues to improve and eating a whole applesauce or yogurt is a daily occurrence now. She certainly enjoys having Grandpa and Grandma Schmanski around just as all of us do of course.

I had an interesting call from the Rehabilitation team at the PCMC this week. Tori's muscle spasticity and tone is very high as everyone knows and it continuously puzzles her doctors and us as well. Well it seems that the results of a baclofen test taken last June were misread at that time and I'm now being told that there is a discrepancy. Basically Tori should have more baclofen in her spinal fluid than she does and I'm quite perplexed on how this could have been missed so badly last June... Apparently with the amount of baclofen her pump is delivering she should have much more of it in her spinal fluid and the reduced muscle spasticity and tone that comes with it. The xray's we did on her then did show the catheter is correctly in position but they are guessing there may be 'leaks' in the line leading to the catheter. So Tori will have surgery on May 16th to get a new line and catheter and they are going to be placing it higher up on her spine as well. They are hoping by raising it the baclofen will provide more support for her upper extremities that need it the most. Her arms, shoulders, chest and upper back. We will probably have to spend a night or two in the hospital again. Shriner's still hasn't gotten back to us on her tendon release surgery slated for early June. Needless to say it will be a busy couple of months for Tori and the rest of us as well.

Meredyth continues to do great work with Tori each week and we are having to reset Tori's PT sessions because we lost some of her insurance recently. Insurance battles are constant and I don't see them ever getting easier... Hopefully we'll get Tori's PT sessions going again this week and if not the following week.

Greetings,

Tori continues to do well and she had a good week and weekend. She is rarely agitated and it is much easier to calm her on those occasions when agitation does set in. It was very nice out this weekend and she spent plenty of time outside with Guy, Brendan and I. Maria and Whitney were off to Dallas for another dance competition but will return late tonight. We are also very excited because Grandpa and Grandma Schmanski also arrived today and will be spending some time with us at home again.

I'm happy to report that Tori can now entirely finish off a yogurt or applesauce!! She had more cheese, french fries and some steak this weekend as well. So her eating and swallowing progress continues and we will keep working on it so she gets stronger and stronger. I'm finding that she does better with larger bites but I'm still hesitant in giving them to her... Meredyth also continues to work on Tori's mouth control as well. Tori can close her lips around a spoon and can do it on a straw as well. But still no straw sucking action yet.

Maria and I took Tori to the Shriner's Hospital for a checkup and surgery scheduling and afterward to the PCMC for a baclofen pump refill. Tori will have tendon release surgery on both feet sometime in early June. They will be sending us a final schedule this week and Tori will need to wear casts on both feet for 6 to 8 weeks afterward. She will also have new hand splits made while she is there as well. The surgery will require a one or two night stay at Shriner's. It is important for Tori to have her feet corrected so we can begin to place her in a stander once again. I've now placed stander shopping back on my list of many, many things to do.

Thank you all once more,

The Schmanski's

Good evening,

It appears that Tori, Tinkers and I survived the week while Maria, Whitney and Brendan were in Las Vegas for spring break. They left Wednesday morning and Grandma Harris stayed at the house helping me with Tori until early Saturday afternoon. I ran back and worth from work during the week to help with Tori who did just fine with her Grandma for the entire time. We even drove up to SLC to shoot a commercial for an upcoming Golf Tournament in St. George and I'll be sharing the details on it here shortly.

After the commercial shoot we stopped at the Red Lobster where Tori had some shrimp, crab meat and some diet coke. She did very well during our early dinner by eating nicely and remaining calm and attentive throughout. Tori continues to eat better and better and she even ate and entire string cheese stick during the week. We also went to dinner at Applebees with my brother Todd, Laurie and their family on Sunday afternoon. Tori did just fine once again and ate some french fries and drank more diet coke. The extra eating combined with the additional 500+ calories per day of liquid nutrition has brought Tori's weight back up again. I'm not sure by how much but I can tell she is heavier when I pick her up to place her in her wheelchair. We'll see just how much she has gained later this week at the Shriners Hospital.

After Tori spent Saturday morning outside watching me mow the lawn, I decided to take her out to a movie. We went and saw "Night at the Museum" together and we both enjoyed it of course. Afterward I took her for a drive around Orem to check out the town. She spent the majority of the weekend in her wheelchair with Tinkers and I watching movies and basketball games. She was very calm, aware and attentive during the entire weekend and was just slightly agitated only a couple of times.

Tori had PT and ST sessions last week and Royal is seeing even more improvement in her stretching and limb range. I also continue to provide PT as I can and it's to see the Tori can rest her arms down along her sides. She continues to do well with her nightly arm raises and movements as well. Meredyth's ST session this week was very encouraging and pleasing because Tori was so engaged in the exercises. Meredyth did more card games where she would write the same word on two sheets of paper and purposely misspell it on one of them. I happened to be home to watch Tori accurately identify by looking at the misspelled or correct word when asked. I still find myself questioning just how aware she is but seeing her in action like this always gives me more hope. It is always encouraging to witness and I hope and pray she continues to surprise us all!!

Hello again,

Tori is still doing very well lately but I am behind a little bit on updates once again... Tori remains typically calm and not agitated throughout the day and we are using far, far less xanax and zanaflex that we once were.

The Dance Club held their year end concert and Maria, Brendan, Tori and I watched Whitney perform in many routines. All of Tori's friends were performing as well and Tori did very well being around them and everyone else after the performance finished. Tori watched all of the concert and lasted the entire 3 hours!!! That is quite impressive for her as she normally would become restless and agitated after 2 hours tops. She was very calm, alert and attentive to all of the routines and watched them very closely. We were on the front front row so the dancers came very close to her at times. Whitney did phenomenally as usual and it ended up being a pleasant night for all of us. I posted a few pictures in the images section in the right hand column of the Pray4Tori site.

Tori is spending more and more time in her wheelchair lately and around us all in the kitchen and family room much of the time. This helps us in keeping her eating snacks and dinner through her mouth. She is still doing well on that front and we're trying more and different food items each day. Tori received her ST and PT late last week and did well in both. She is staying alert and participating which is nice to observe and Meredyth and Royal appreciate it as well.

Maria had Tori outside for much of the day today and they worked in the yard. Thankfully Tori didn't get another sunburn this time. Maria is planning on taking Brendan and Whitney on a spring break trip later this week so it will probably be Tori and I at home. I'm sure we can find something fun to do as well!! :-)

Finally, here is another great article on Stem Cell research in China. It's still amazing to me how many people question our decision to go to China of all places?!?! Research it people as it is not the communist China of many years ago... China also has a trillion dollar budget surplus so just where do you think they will be spending it???

Tori was exhausted after her long night at the concert.

Tori and Whitney celebrating after the performance.

Tori arrives at the concert and she stayed awake and calm during the 3 hour presentation.

Good evening,

I'm making a much more of an effort to provide updates within 2 or 3 days once again. It's always so much easier to create updates when Tori is actually doing better of course :-) Hearing and updating about Tori isn't nearly as fun when she isn't doing as well...

Fist off, here are a few announcements. We received a call from Senator Orin Hatch's office today to inform us that he will be mentioning Tori tomorrow on the floor of the Senate in Washington DC. It will be broadcast on CSPAN at 9:00am MST for all of those interested. He is pushing for Congress to pass the Stem Cell Bill which of course will happen followed unfortunately by yet another George Bush veto... It is frustrating to say the least since the majority of American citizens want this bill to pass. The last line of the article sums it up quite well - "It will send a lot of this research offshore and it will diminish our standard of excellence in our country when it comes to scientific research.'' Come on George, please do the right thing on this one so we can get moving as a country on this front!!!...

This Saturday Whitney is also having her year end concert performance at Timpview High School (3570 N. 650 E. Provo). The concert begins at 7:00pm and anyone is invited. Tori will be attending as well. There is also a benefit "Acapella at the Point" concert for Travis Ashton and his trip to China for SCT being held at the Electric Park inside of Thanksgiving Point in Lehi. It begins at 7:30pm and tickets can be bought at the doors of each event. It was also nice to finally meet Travis and his mother Missy today. Their trip to China begins in early June and are already hoping and praying for great success.

Alright, now to Tori who has had a couple more very good days. Meredyth had another very productive session with Tori and she had her selecting the correct characters form the computer for a "Planet of the Apes" collage. Yes, those wonderful apes once again. Tori would pick out the various ape characters by pressing the "Yes\No" switch to indicate which ones belonged in her collage. She didn't miss once and had a lovely collection of apes in the end :-) Meredyth concluded the session with more mouth exercises and tonight Tori ate small amounts of cheese, chicken, bread, corn kernels and Hagen Daz ice cream for dinner. Plus some more chocolate and strawberry banana fruit smoothie. We are challenging her to try and keep up with her little brother Brendan's eating habits. We don't think she catch him though at this point since the kid is an "eating machine" ;-) Her PT sessions for the week should also begin tomorrow.