Tim Schmanski's blog

Hello all,

Tuesday and Wednesday were another couple of good days for Tori. She slept great Monday night but not as well Tuesday night as she was awake on and off throughout the evening.

Tori is still eating small amounts of food and she had white rice, more cheese,applesauce and some ice cream over the past couple of days. She still becomes agitation during the late afternoon and early evening hours and we counter it with xanax or zanaflex depending on how tight her body is.

Megan from THS came over again today to work with Tori but she was quite sleepy so the tracing of leaves onto paper wasn't as successful as it could have been. Megan works very well with Tori and she has alot of experience working with disabled kids.

My stem cell research is continuing and getting Tori's passport is one of the next items on the list. There are some very good Patient Blogs and Experiences posted here on the China Stem Cell News website. Lukas is in Shenzhen, China right now and here is his Blog which is very descriptive about the China experience as a whole. I'm communicating with others who have made the trip as well and Tori WILL be getting SCT at some point in the near future.

Maria and Whitney left for Boston tonight to spend some time with Guy and Sophie who are now living there. I'm sure they will have a blast!! So it is me, Tori, Brendan and Grandpa and Grandma for a few days until they return.

Thanks you all once more,

-Tim

Good evening,

Tori's week started well today as she had plenty of sleep during Sunday night and early Monday morning. In the late morning Megan from THS arrived and worked with Tori for an hour. Now that they have had a few sessions Tori is beginning to respond better to her. Megan worked with more cards today and Tori got 7 out of 10 in picking out numbers. They also did some work with cards that had various emotions on them but we believe they are too abstract for Tori. Megan is going to see what other types of cards she can find.

In the afternoon Meredyth stopped by for an ST session. Tori did better than she has before in sticking her tongue completely out of her mouth to taste and lick a sucker. She repeated this over and over and I worked with Tori on it again tonight. Then Tori played several games on Meredyth's Mac computer. She had the big button connected and Tori would use her right hand and thumb to press it and the proper time. She did pretty good using this as well. Meredyth closed the day by having Tori pick the correct letters or letter combinations placed on cards. The letter(s) were associated with a sound which Meredyth sounded out and had Tori look at the card that matched. Tori did 20 out of 26 on this!! :-) Tori was tired out after that but she deserved a break after all of her great work.

Mike and Linda also came over to visit Tori and she was completely relaxed during their visit. Tori then spent the evening in her wheelchair watching TV as well as Brendan and Tinkers racing around the house. Grandpa and Grandma Schmanski also came back tonight after a weekend of kid sitting at Todd's house.

Please keep all of the prayers and support coming for Tori!!

The Schmanski's

Hello again,

Tori had another good weekend. She rested well and was calm and was not agitated for most of it. She spent alot of time in her wheelchair as she usually does and watched many of movies as well.

She was in the kitchen with the rest of us as we were hand painting Whitney's new picture frames for her room. The project went on all weekend and still isn't quite done so our kitchen remains a mess...

Tori continues to eat small amounts of food and we share with her whenever possible. Candy is always great, cheese, yogurt, applesauce, coffee, diet pepsi, you name it and we are trying!! She still needs to be focused when eating though so she will swallow completely. Some times she'll try and 'chipmunk' some in food in her cheek for later ;-)

Another week has begun so rounds of ST, OT and teacher visits will proceed again.

In closing today I found an interesting video on the CNN site. It is about an 11 year old boy who finally woke up after being in a coma for 22 months. Stories like this always give you a little more hope.

CNN video

Thank you all,

-Tim

Hello there,

Tori had a couple more pretty good days. She didn't sleep as well as she has been lately last night and watched a movie for a couple of hours.

Thursday brought Megan over again who proceeded to paint Tori's toes. She also had some other activities with Tori but I am unsure of what they were as Megan and Tori were the only ones in the room. Meredyth also visited this afternoon for an ST session with Tori. They ran through some of the standard ST session activities and Tori participated well for most of the time.

Grandma and Grandpa Schmanski went to stay at my brothers house for a few days so we are on our own for a bit. Tori is sleeping soundly as I am wrapping up this update.

Thank you,
-Tim

Hi,

Tori had a good day today and she slept well once again leading into the day. Megan form THS came over and helped Tori create a poster. Tori chose the background paper color of orange and proceeded to indicate which pictures of various objects she wanted glued onto the paper. There were numerous pictures to choose from and they included foods, objects, animals, etc.. Megan would ask Tori to select with her eyes from a set of pictures which she would then move around again to make sure Tori would pick the same one. Tori was very consistent in her picks and the final poster had about seven of them placed. It was was an encouraging exercise from what I understand. Grandma Schmanski was also helping during this time.

Tori spent the afternoon and early evening with all of us in the family room where she watched television and Tinkers chase Brendan around the house :-) She went to bed early and slept very well through Tuesday night as well.

Thank you all,

-Tim

Hello again,

I guess Tori napped a little bit too much Sunday because at 3:00am early Monday morning she was up wanting to watch some movies and was in an agitated mood as well... So she stayed awake for 2-3 hours before falling asleep again. She spent alot of Monday napping again and catching up on her sleep I guess.

Tori is already sleeping soundly already and she might want to be up in the wee hours again tonight. It was a quiet day for Tori since she was sleeping most of the time. She did wake up in the afternoon and spent some time in her wheelchair where she enjoyed some of Grandma Schmanski's famous chicken soup. Tori had 10-15 small spoonfuls of it tonight.

Julie Depalma also stopped by for a visit today and she timed it well as I believe Tori was up. Tomorrow Megan from THS will stop by for a home schooling type visit.

Thanks again,

-Tim

Hi all,

It was a typical and weekend for Tori and her demeanor was pretty good throughout it. Her anxiety builds toward the end of the afternoons as it used to and we have been having to give her xanax on a daily basis at that time. But during the majority of her day she is pretty calm and aware.

Tori also spent large amounts of time in her wheelchair as she usually does on the weekends. It was a gorgeous 80 degrees all weekend so she was on the deck outside for much of that time as well. We had several barbecues and Tori was right in the mix of them. The weather is now expected to turn into Fall and that will mean less and less deck time for Tori unfortunately...

And that is the short report for the weekend!!

Thank you for your continued support and prayers,

-Tim

Hello again,

Tori is now basically back to her normal schedule which includes sleeping at night from about 10:00pm until 8:00am. She then gets a sponge bath and is typically awake until 11:00am or so when she takes a 1-2 hour nap. After that she is normally awake the rest of the afternoon and evening.

She spends that afternoon and early evening time in her wheelchair around her family. Tonight she had some very small bites of salad but not much else.

Megan also came over and introduced herself to Tori Thursday morning. Megan is the special education teacher over at Timpanogos High School. We are debating whether to take Tori there or not but we may just opt for some home schooling at this point. We shall see.

Until tomorrow,

-Tim

Hi everyone,

Tori is just about back to her 'normal' self since her bout with another illness. She is sleeping nicely again and that alone certainly helps all of us.

The school district physical therapist stopped by and did a preliminary evaluation. We will now try and schedule and PT session for once a week.

Tori continues to spend her afternoons and evenings in her wheelchair surrounded by her family. She seems to enjoy this time of day and being involved in the activities.

Maria and I took Tori to the Shriner's Hospital in SLC on Tuesday for her 6 month checkup. She had an x-ray of her spine and it indicated her scoliosis or curvature of the spine has increased from 39 degrees to 45 degrees. They will typically insert a rod to straighten the spine once it reaches 60 degrees or more and we examined another x-ray with the rod inserted. Her spine would also be fused with the rod in place. Tori may get there or she may not. Tori left achilles is extremely tightened and surgery will eventually be needed if we want to try and stand her on a tilt table or something. We need to consider this further before acting on it.

That is about all for now.

Thank you,

-Tim

Hello again,

Tori continued to improve this weekend and is now require zero oxygen once again!! There are only a couple of sores left in her mouth and the ones on her chin and nose are healing as well.

Brendan and I were in Mesquite, Nevada with the rest of my family for a little break this weekend while Maria and Whitney took care of Tori. It certainly was nice to get away for a couple of days but it is much more enjoyable doing this with the complete family...

When Brendan and I arrived home on Sunday Tori was very awake and aware and again looking so much better than when we left. Tori even slept well for Maria and Whitney over the weekend. She spend Sunday afternoon and early evening in her wheelchair and was in the mix of activities going on. Grandpa and Grandma Schmanski also returned from Mesquite and will be spending some time at the house once again.

Tori will have some additional therapy this week as the school district will be sending therapists over for additional evaluations. We are still trying to ascertain the best way to cognitively test Tori in a consistent manner.

Thank again everyone,

-Tim