Monday September 17th through Thursday October 4th

Hello again,

I apologize in advance for yet another long overdue update... Tori is currently in dire need of the next round of botox and phenol injections as her arms, shoulders and upper back are very, very tight and uncontrollable at times. Thankfully she is scheduled for the injections on October 5th. As I mentioned in the the last update, Tori has the tendency to raise her left arm and hand over her head when she is agitated or uncomfortable which is now quite often. Many times she lifts her poor left hand right into her mouth which where her teeth continue to cut up her hand of course... Primarily her left pinky finger which is now constantly bandaged as we try and heal it up. We have resorted to placing and sometimes taping an oven mitt on that hand to prevent further damage. She can raise it and get it in her mouth faster than you can imagine... Maria also had the unfortunate experience of getting her finger caught in Tori's mouth during an agitated phase and Tori clamped onto it and wouldn't let go. Thankfully Whitney was home at the time and heard Maria screaming then helped calm Tori enough for her to let go... Not really fun times...

Another issue we are closely watching is the fact that since Tori's tendon release surgery on her ankles her feet are now both twisting and almost laying flat towards the right. It seems to be originating form her hips and her left knee continues to be hyper extended. We will need to get some guidance on those issues from the Orthopedic physicians and the Shriner's Hospital. We also need to get her AFOs resized and refitted during that visit aas she cannot wear them in their current state.

Alright, that is enough of the bad news... On the good news front, Tori has a new PT (Physical Therapist) named Cari who is visiting twice per week for just over an hour. She works very well with Tori and focuses on Tori's entire body. She is certainly the best PT we have had in the home working with Tori. Sure, she makes Tori scream at times much more than Maria and I would but it is dearly needed. She has already improved Tori's range of motion in many problem areas like her shoulders, elbows and knees. Tori's wrists are still very tight and she resists the stretching of her fingers and thumbs the most... Tori is exceptionally strong. If she doesn't want you to move anybody part she can halt it as needed. That is why it is so important to get her interaction and hopefully relaxation during the stretching.

Meredyth continues to visit twice per week as well and is continuously trying new methods of interacting with Tori. Tori has been doing quite well at listening to sound excerpts then trying to identify the artist with flash cards. Her prior life revolved around dancing and music so I don't doubt this at all. Meredyth does numerous other exercises with her and Tori does great with some and mediocre with others. Rarely does she totally fail in an exercise.

Grandpa and Grandma Schmanski have brought their 'home' back and parked it next to our house once more. The motorhome continues to fit their lifestyle nicely as they can take it with them where ever they go. Thankfully they are now staying with us for a little while and helping out with Tori and our family as much as they possibly can. We are so grateful for this support and love them both dearly. They typically stay until it gets colder at which time the warm weather 'bug' bites and they head south where the sun and warm temperatures are.

Brendan, Tori and I made the hour drive north this past weekend to have a Sunday dinner and visit with my brothers and their families. It was wonderful to see them all again!! We ate at the Olive Garden and here is a nice picture of Tori and her cousins. Tori even took a nap in Ryland's bed during our visit to Todd and Laurie's new house which Tori had never seen. Tori enjoyed the outing and was very well behaved during the entire day.

Lastly for this update, I have an announcement on an important and upcoming endeavor we are planning. Maria, Whitney, Brendan and I are going to attempt our first vacation with all of us together since Tori's injury almost 2.5 years ago. Up until now Maria and I have had to split taking the kids on any sort of activity or vacation... That unfortunate practice has taken an emotional toll on all of us and it has to change... We are certainly a bit apprehensive and nervous about this trip since either Maria or I are almost ALWAYS with Tori unless we are within 10-15 minutes away and only for 1-2 hours maximum in that case. Tori is often unpredictable of course and her emotions and pain must be read by her actions. Only Maria and I have administered appropriate and helpful medications needed in these cases or taken her to various hospitals in emergency situations of course... Both of my parents will be staying close to Tori during our departure and I have arranged for home nurse availability to administer medications and check her health. We will be meeting and training them during the next several days and whether they spend entire days and nights at my home is all based on Tori of course. Again, we would never consider even trying this without my parents involvement as outside of Maria and I, they know Tori and what it takes to care for her better than anyone else. Thank you Mom and Dad for providing this opportunity for our family. Please offer your thoughts and prayers that Tori may remain healthy and safe during this time frame.

And thank all of you once again for your generous and greatly appreciated love and support for Tori and our family. I also promise again to work on providing more timely updates for all of you as well.

The Schmanski Family

Tim, Maria, Tori, Whitney and Brendan

How did the vacation go?

I have been checking everyday to see how things are going? I was just wondering how Tori did while you were on your vacation? I was also looking forward to hearing how your vacation went?
Just want to let you know I've been praying that all went smoothly.

Love in Christ,
Sue

Hi

Yes, many people are probably anxious to hear how Tori is doing due to the large number of people who monitor this site. I hope and pray that Tori is doing well despite her condition. I hope that the family is getting the ethical, medical, financial and spritual help that need to deal with their difficult situation. I can't imagine how difficult it must be. But, people hope and pray that they never give up on Tori. She is so young and precious and it seems she means so much to her family than anyone can imagine. Perhaps they should pool their resources together a network with other families dealing with same situation.

"There is great wisdom and knowledge in the multitude of counselers."

At Michael Molbey's site (www.justiceforchale.com) the following was posted from a church bulleten:

Some doctors and ethicists claim that patients with dementia or in so called "persistent vegetative state" are no
longer really persons and that families should deny them even the most basic forms of nourishment and care. And
yet, however weak and vulnerable such patients may appear, they have the awesome power to inspire heroic,
sacrificial love from their family members and caregivers-- a power that can lead to the sanctification of those who
care for them.

What wonderful words!

God Bless!

Re: Hi

Thank you for your continued support for Tori and our family!! Your and everyone else's contributions to this site are greatly appreciated. We are certainly leveraging many avenues for helping our situation. Many of them are through others in similar situations. Another is this site itself. It's not easy and it will never be easy... There are highs and lows at all times and the challenges remain constant. But in the end, we cope with it all the best we possibly can and try to live on.

Sincerely,

-Tim

Networking

Here are some families you may wish to contact to gain a great nework of support. The internet can do wonders:

http://www.prayforizzy.blogspot.com/

http://prayforabby.com/