Hello again everyone,
Tori is now finally cast free!!!! :-) She had them removed last Tuesday and did re markedly well during the cast cutting procedure. Her feet look much, much more natural but they have really been hyper sensitive since the removal. But they are finally becoming less so at this time. She also had her new AFO's (Ankle Foot Orthosis) placed on her feet. They are basically plastic support 'shoes' that help keep Tori's feet aligned and prevent them from going back to how they were. She will need to keep them on as much as possible. Tori was in a alot of pain and discomfort about 3 days afterward and we finally removed the AFO's only to find some pressure sores.... So we have had to keep them off for a while now as they heal. We also put Tori in her wheelchair, leaned it way forward and placed her feet in a large bucket of hot water and Epsom salt. We soaked them good and Tori loved it!! Her dead skin was just layering off of her... She still has some sores from her skin being stretched so far as well but they are beginning to heal.
Other than that Tori is doing pretty well. She is eating plenty of yogurt and 'Dippin Dots' ice cream. She is spending her afternoons in her wheelchair as usual and is back to being rarely agitated. Meredyth continues to come and complete ST sessions twice per week with Tori who does well on the majority of exercises.
There was a great NBC news video on Brooke Barels trip to Hangzhou, China. It was really nice to see all of the friendly faces of of the SCT staff at the hospital and of course we wish Brooke and everyone else going through SCT the best. Here is Brooke's website as well. Here is an LA Times article on Samantha Palumbo which is another great and inspiring story.
I can't believe it has been 9 days since my last update?!?! My apologies again... The summer days seem to be just flying right by us all. Tori continues to remain healthy and is in good spirits the majority of the time. She still has her moments of agitation but they seem to be less frequent as before. We continue to treat her agitated states with xanax and zanaflex which typically calm her down in about 15-30 minutes afterward.
There was another nice article called Utah families encouraged by stem cell treatments in the Daily Herald newspaper that focused on Tori, Travis and Dena who all have been to China and back for SCT. Please offer your thoughts and prayers to them all as they continue their recovery journeys.
We have been making a focused effort lately to get Tori out of the house as often as we possibly can. She has been so calm and attentive while out lately and she certainly soaks in everything going around her. We took her to the new IKEA store in Draper last weekend for several hours and she did wonderfully. She saw Shrek 3 this weekend and we also went to the Gateway Mall in Salt Lake City for an entire afternoon. While there we also visited a Children's Discovery Museum that kept Tori, Whitney and Brendan entertained as well. Guy set up a large set of PVC piping pieces strategically placed on a magnetic wall so a plastic ball could travel downward through all of the pieces. Tori could track that ball through the whole process with ease. I'm sure if she could she would have told Guy how to place the pieces correctly as well :-) We then ate at z'Tejas and even got rained on a little bit before we left. Tori also went to the Training Table restaurant as Guy's pictures prove. It is also always nice to hear from people who know of Tori's Story and have followed this site closely. As I passed by a table a young couple asked me if that was Tori and told me they have been following the site for a long time. So after they finished eating they stopped by our table and were introduced to Tori. We thanked them for their support and generosity and gave them some Pray4Tori bracelets as they departed. For all of those living locally please, please don't ever hesitate to introduce yourselves to Tori and our family if you happen to catch us while we are out and about. Your love, prayers and support means a great deal to us all and hearing how Tori has touched your lives is very important to us as well.
Happy Birthday Tori!!! We love you!!!
Yesterday was Tori's 17th birthday and we decided to keep this one close to our family and some of her good friends. We didn't have any party or anything of that nature. Holiday's and special occasions like this are always bittersweet of course and we do our best to balance happy and celebratory thoughts in our minds over the saddening ones that are always present as well... Honesty, it's a very tight line to hold sometimes... But at least Tori is still here attempting to celebrate with us and that in itself is a miracle and a blessing.
We did manage to take Tori to the Macaroni Grill for dinner with Grandma Harris, Maria, Whitney, Brendan and I. Tori did well but decided to try and take a nap in the loud environment and eventually she had a small startle seizure... Jake stopped by unexpectedly with a bouquet of wonderful flowers during the day and Tori was happy to see him once again. Thank you very much Jake. Marilyn and McKenzie stopped by and visited for a while and later in the evening several of Tori's good friends came over to wish her a happy birthday. In addition, Mike and Linda Newsome paid a pleasant visit as well. Once again, thank you to all who came and to those who posted on Tori's site for greatly helping keep our thoughts on the happy side of the line!! :-)
Tori did pretty well with Meredyth this week during her ST sessions. Movie trailers was a theme in one exercise with some extreme sucker manipulation and usage as well. Tori continues to sleep comfortably and well during the night and spends the afternoon and early evenings in her wheelchair with the rest of us. Much of that time is outside on the deck where she watches Tinker's intently and often takes a nap.
I just wanted to wish Tori a very happy 17th birthday! We love you so much and can't wait to come see you today. Have a great day Tori and be so happy!!!!
Mare and Kenzie and Angel!
I had another couple of business travel days last week and Maria and Brendan are still in San Francisco enjoying some down time as I am typing this. They should return tomorrow evening. Grandma Harris, Whitney and I have been taking good care of Tori I am happy to report she is still doing quite well. She is still sleeping great, has very good awareness and is rarely agitated as of late.
Whitney, Tori and I went to see "Bourne Ultimatum" over the weekend and Tori watched almost the entire movie. She took a slight nap in the middle of it though I don't know how she did given how loud that movie was. She was wearing headphones for most of the movie as well. It seems to me like Tori's awareness has been at a very high level lately. She tracks people, birds, Tinker's the dog and even bee's with relative ease. When I am throwing the ball with Tinker's Tori follows it's trajectory from the deck and even turns her head as needed on long throws. If I throw it straight into the air she will follow it accurately as well. This is all great news of course and I haven't observed this level of attention to these activities even though they have been occurring all spring and summer.
Tori is also making serious attempts to roll onto her back when she is positioned on her side. The problem is her casts are so heavy she can't pick her legs up and swing then over to complete the roll over. We'll see what she can do once those casts are off again.
There was another interesting and promising article this week on Deep Brain Stimulation. I researched this option for Tori a while back but for her spasticity and muscle tone issues. Perhaps it is worth another serious look.
Thank you all for the continued love and support for Tori and our family,
You all have to see this:
If the link doesn't work, go to msnbc.com and look for the story about doctors bringing a man out of 6 year coma.
Whenever I'm down in the dumps, I always find another reason to carry on!
I'm long past due for an update on Tori and I apologize for the rather lengthy delay... Last week was very, very busy as I was on a business trip for most of the week and then I took Whitney and Brendan to Minnesota for a family reunion over this past weekend. It had been 4 years since we have attended so it was great for all of us to see our aunts and uncles and second cousins. The kids had a great time of course!!! Then Maria, Whitney and Brendan headed out to Park City for a few days for a dance competition and they return tomorrow. Then I take off on another business trip and Maria and Brendan head to San Francisco for another break this weekend. So we certainly continue to be quite busy around here.
The good news is that Tori has done very well over the past week and is now oxygen free!!! She is maintaining her blood oxygen levels well and is relatively calm throughout the day. Grandma Harris has also spent the past eight days helping us out at home so she left today to take a much needed break. Tori is spending more time in her wheelchair once again and has been very aware and attentive lately. She even picked out a jet very high in the sky and tracked it along it's path. She is now sleeping wonderfully at night and needs checking on only a few times while she sleeps. I also haven't given her pain medication for almost a week. The pain has definitely resided.
Grandma Harris and I took her to the PCMC for a checkup on her feet last Tuesday. They cut the left cast off to check the scar on her achilles heal. It is about 5" in length and healing very well. They even scratched Tori's foot which caused her to roll her eyes back and just enjoy it!! I can't imagine how itchy those casts are... Then they re-casted her foot and we were off for home. Her next appointment is at the Shriner's Hospital in late August.
Dena Brehm of nearby Park City, Utah recently returned from China where she received SCT and there was a nice article about her trip in the Salt Lake Tribune today.
Tori is still having pain in her feet now and then but only when we have to move them for some reason or another. She is faring much better now and we have eased way back on the pain medication. She still gets herself 'worked up' now and then which increases her heart rate over 150 beats per minute... We have been using inderal to ease her back down.
She is now requiring oxygen only at night and only about 1 liters worth for her to maintain her blood oxygen level in the 95% range. We are once again back in the habit of getting her into her wheelchair every afternoon and early evening. She is tolerating it well and her feet seem to be very comfortable stretched out and up over her pillows while in the wheelchair. Sleep wise Tori is doing well again and has been sleeping through the night for the past few days. It certainly helps all of us when her sleep patterns are back to normal.
Meredyth did stop by this week for some ST sessions and Tori did pretty well on the last one where she did some word matching exercises and played on the computer somewhat as well. Tori did get tired more quickly than usual probably due to her pain medications.
And that is the quick update for tonight. Thank you all!!
Tim, Maria, Tori, Whitney and Brendan
It is Sunday night and Tori finally seems to be out of the great pain she was in all week after her surgery. We have had to give her steady doses of Lortab every 4 hours or so. She was also coughing up alot of phlegm and has been on 2-5 liters of oxygen since her return home. For the first three nights we had to wake up every 1-2 hours and suction her throat out because she wasn't swallowing and her blood oxygen levels were dropping below 80% even with oxygen. Thankfully she seems to be beyond that stage now as she is coughing much less and can be without oxygen while in her wheelchair. While she is sleeping we give her 1-2 liters of oxygen so she can maintain and 95% range or so.
We are keeping busy helping Tori in her recovery and there isn't really much else to report on this time. Grandpa and Grandma Schmanski left earlier this week on their summer trip and we will miss them greatly. This week we will attempt to get her back on schedule with ST and we have another visit to the PCMC for a check on her feet. Her casts are orange and cover each foot and they extend to just below her knee. She certainly knows they are there and if you point them out to her she will begin crying... So we know they don't feel to great to her.
Thank you as always for the love, prayers and support,
Tim, Maria, Tori, Whitney and Brendan
I wanted to quickly provide an update tonight that Tori's tendon release surgery went well and she did make it home last night. We had to wake up just after 4:00am to make it to the hospital by 6:00am. Tori went into surgery ahead of schedule just after 9:00am and was out at 11:45am. We then spent the day in the recovery room where she received alot of pain medication... She is definitely hurting right now. But she was well enough and certainly ready to go home and we arrived there just after 10:00pm last night. It was a long day but we are ALL home now as Maria and Whitney arrived home from NYC just after us at 1:30am or so.
Tori is now sleeping alot since we are giving her heavy pain medication every four hours or so. I'll provide another update this weekend on her progress.