blogs

Monday through Tuesday, November 5th through 20th

Hello there,

It seems like good timing to provide another update given today's wonderful new announcements regarding stem cell research combined with the fact I haven't updated in some time... For those not watching the news or reading the newspapers, there was a significant stem cell research item publicized today. I've included just a few of many, many articles below but in a nutshell they revolve around the fact that they have 're-programmed' adult stem Cells to be more embryonic like in nature without needing an egg or embryo. This is actually HUGE because it helps eliminate the whole debate around using the egg or embryo for the embryonic stem cells. Perhaps we can now get more funding towards this research without the political interference on at least this front. I still believe embryonic stem cell research should continue and without it, today's announcement would have never been made. In all reality, it will take many more advances like this to help Tori given the severity of her brain injury but one tiny, tiny step at a time I guess. There is not much more we can do other than to hope and pray advances come in time to provide Tori an improved quality of life.

Time Magazine: A Breakthrough on Stem Cells
MSNBC: Skin cells made to mimic stem cells
MSNBC:Video

Tori is still doing well, remaining healthy and participating in her various therapy sessions. Nothing extraordinary to report at this time. We were able to take her to the 'Art for Heart' charity dance recital in SLC last weekend. She watched over 2 hours of dance performances without any agitation or anxiety and was fully focused on each performance. She also had some of her old dance team members visit her after the performance. She seemed to have a great night along with the rest of us.

Tori's Recovery (Suggestion)

Dear Schmanski Family,

I know you receive suggestions constantly about what to try for Tori and I actually suggested this over a year ago and just wanted to give you the info again in case you feel it is something you are open to for Tori now.

This website www.newdimensionsinhealing.com is the site of Melinda Lee. She uses the energy healing technique called Theta Healing and it is changing and improving peoples lives. On her site there is a Fox News story you can see for more information. I have witnessed incredible benefits for people with everything from MS to Migraines to emotional stress and depression to chronic pain. The treatment sessions can be done over the phone, in her office or she could probably come to you, (she lives in Orem as well). If you have any questions you can email her or call, that info is also on her website.

I am sure you, more than anyone, would love to see Tori 100% again and I feel this could be great assistance to you.

Best Wishes Always,
Alicia Green

Friday through Sunday, October 19th through November 4th

Hello again,

We are all now back into the standard routine of providing Tori's daily care and facilitating all of our other family needs. Brendan and Whitney remain heavily involved in their school activities and Whitney continues to follow her passion for dance by practicing up to 5 hours per day. In fact, Maria, Whitney and Brendan spent this past weekend in Ogden at a NYCDA competition. They stayed overnight at my brother TJ's house who lives a short distance away. The kids were able to spend some quality time with their cousins which was nice to see once again.

Tori, Tinker's the Yorkie and I spent that weekend at home where we cleaned the house and tried to relax as much as possible. Tori has remained healthy and her progress on learning and physical abilities is about the same as it has been for some time. Since her botox and phenol injections several weeks ago she has exhibited much more control of her hands and arms. We typically see this right after the injections and it eventually fades as the botox wears off. But we are taking advantage of this control and range now during her PT sessions where Tori has improved. Cari still provides the sessions twice per week and runs Tori through a full range of motions on almost all of her limbs and major joints. We also provide this exercise when we can but could probably do far better than we are currently... We try and get Tori into her wheelchair daily in the late afternoon or early evening time frame. Another nice result of the injections is that Tori can sit more comfortably in her wheelchair with her arms naturally positioned on the arm rests. Yogurt, ice cream and other soft foods are still her favorites and we typically feed her while she is in her wheelchair. She can still consume a whole yogurt with only minor or no coughing so her ability to eat remains stable with small amounts of soft food. She doesn't gag or choke nearly as often as she used to but we are still gauging just how much we can feed her without a vomiting episode which unfortunately could lead to an aspiration... It's a tight rope balancing act at all times it seems.

Some Hope to consider for Tori

http://www.dailymail.co.uk/pages/live/articles/technology/technology.html?in_article_id=490646&in_page_id=1965

Perhaps you may wish to investigate this further to see it this is feasible for Tori.

Hope All is well with Tori.

God Bless,

James

Friday through Thursday, October 5th through 18th

Good evening,

Maria, Whitney, Brendan and I returned from our five day stay in Boston, Massachusetts on Monday morning. We had a wonderful time and were able to reconnect somewhat even though we comprised only 80% of our family. We did alot of visiting with Guy and Sophie, site seeing, shopping, eating, sleeping and eating some more... ;-) I'm also happy to report that Tori did absolutely great during our absence and gave Grandpa and Grandma Schmanski ad Moira her nurse very, very little trouble. We had emergency plans prepared just in case and thankfully we didn't need to use them.

Tori only needed medication to ease her anxiety and agitation at times and that is nothing outside of her normal routine. Grandma and Grandpa were able to provide this for her as well as her daily care and feeding pump preparation while Moira came to the house twice per day to administer her daily doses of medication. We also had the video camera configured so we could watch Tori from my computer in Boston. We were able to determine what medication to give her at certain times to calm her agitation. Meredyth also came for Tori's ST sessions and Cari for her PT sessions while we were gone. All in all we don't think things could have gone any better!!! :-) We were able to relax a little more after the nervousness passed during our first couple of days and nights away. We did check in often though.

The Friday before we left Tori received her botox and phenol injections throughout her upper body and arms. By the the time we left Tuesday afternoon the botox had taken effect and Tori was a much more relaxed and not agitated person. We really couldn't have left her without her getting the injections. Now she can sit in her bed or wheelchair comfortably with her arms relaxed and laid across her lap. It's a marvelous thing even though it is such a simple task!!! If Tori ever gains immunity from botox we will be in big trouble...

Since we have been back Tori's demeanor has remained relatively calm and relaxed. Grandpa and Grandma headed south to the warmth of Mesquite, Nevada to take a well deserved break. Thank you both so much again for providing our family this opportunity!! We are now back into our 'normal' routine of caring for Tori and her siblings and doing our best to keep the household running. I'll also be meeting with Tori's school counselors next week to determine a learning plan for her. We'll see what we can come up with.

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.

sending our love to your beautiful daughter

Hello,

Just a quick note to send our love and prayers your way. I'm praying that Tori is doing okay and that you've just been too busy to post a new update in a while. I have to admit, I get a little worried when a lot of time has passed in between updates. Tori grabbed my heart from the moment I read her story in 2006 and she is with me and in my prayers all the time.

Love and positive thoughts for all of you,

in His love,
Diana Palumbo

Michael

Don't give up on the Stem Cell therapy. Michael Mobley from www.justiceformichael.com is going back to China for his second stem cell treatment. That appears to encouraging news as according to the father, the stem cells are have some improvement. Perhaps he should compare notes on the matter and pool your resources. You both share the same situation. Hope all is well with Tori.

Tori is in my heart.

Hi, Thanks for the update. I check daily and get disappointed when there isn't a new update. I UNDERSTAND though really and don't expect anything. It's just that Tori and your family has a place in my heart and I like knowing how things are going for her. I keep praying that I'll read about more and more awareness and progress. I want that so badly for all of you. Us really. All of us dealing with brain injury and our hurt children. I watched the video this morning and was quietly taking in your beautiful daughter and her smiles. She is a beautiful girl. I'll continue praying, Tim. God will see us through.
in His love,
Diana Palumbo

Wednesday through Sunday, September 5th through 16th

Good morning,

Time seems to be flying by and summer is officially over unfortunately... Most of Tori's wounds on her feet are now healed and her feet are looking almost totally normal. We now need to get the AFO's re sized a little so she doesn't get the pressure sores. Tori's health, anxiety and behavior has been pretty stable and consistent since my last update though she is about due for another set of botox injections. We can tell because her arms and shoulders are tightening up again and she is beginning to raise her left arm up over her face more frequently. When she does that she also has a tendency to put her hand and fingers in her mouth and she currently has some cuts and scrapes from doing so.... We are trying to schedule for more botox during the beginning of October.

Brendan and Whitney are well into the school year now and are enjoying it for sure. I have been traveling a little more lately for work which is always keeping me busy and Maria continues to provide daily outstanding love and care for Tori. Maria's mother, Grandma Harris, also has been spending most of the days during the week at our house helping out as well. She typically leaves home for the weekend and we greatly appreciate her love and support!! Thank you Grandma Harris!! :-) My parents, Grandma and Grandpa Schmanski, should be arriving from their summer visiting of family later during this week.

Thank you all so much!!

The Schmanski Family

Tim, Maria, Tori, Whitney and Brendan

Syndicate content