Tim Schmanski's blog

Hello again,

It's has been a very busy past couple of weeks with the holiday season in full swing but I believe our Christmas shopping and preparation is mostly complete. Thank goodness for that!! :) Tori unfortunately became sick for a few days with some vomiting and a congested cough but she worked her way past it and is now doing much better. We presume she caught something from one of us because we all had a cold at one point or not during the two weeks. We have been playing it safe and haven't been taking her outside much at all. It has also been very cold lately with temperatures remaining below freezing.

Tori's range of motion in her arms, shoulders and legs has improved dramatically with Cari's continued PT sessions. She measured an 80 degree bend in her right knee this past week. When Tori cooperates with Cari her flexibility is fairly good but if she is not in the mood for stretching it's about impossible to stretch her due to the resistance and tension she creates in her muscles. Jake and Meredyth continue to provide sessions during the week as well. We are trying another adaptive device called the MightyMo with Tori and it is basically a Tablet PC with some powerful software installed. Hopefully it will allow Tori to select a wide variety of buttons presented on the screen. You can even attach voice responses to the selections. The Head Mouse it leverages doesn't quite work for Tori since she has to turn her head to move the mouse. I'm hoping to connect her retinal scanning camera to the system which allows her to just focus with eyes to move the mouse around the screen. I am still undecided whether she can actually comprehend the the choices presented to her. Based on how Tori responds to choices either on paper or on the computer I sometimes have no doubts and other times I am completely doubtful... So the struggle for consistent and cognitive communication from Tori continues. We will never stop trying to reach her or provide her the means to reach us.

Greetings,

The beginning of the holiday season is upon us and we made it through the Thanksgiving Day starter. We hope everyone had a nice Thanksgiving!! Our's was bittersweet and emotional as all holidays seem to be at this point... We are blessed to have Tori still in our lives but miss her lovely personality and participation nonetheless. We had a somewhat quiet Thanksgiving this year with Grandpa and Grandma Schmanski being our only company. We made the large and standard Thanksgiving Day dinner and Tori even enjoyed some very small helpings of mashed potatoes and pumpkin pie dessert. She was also in her wheelchair along side of us all during the preparation which lasted all day. She seemed to enjoy it and closely monitored everything going on around her. Perhaps someday she will be able to communicate to us all her enjoyment and we will continue to hope and pray this day comes.

Tori's health is remains good and she is continuing to have her daily therapies and educational sessions with Jake as well. We took Tori to the Shriner's Hospital for another checkup and they ordered her some new AFO's or braces for her feet. The new braces are made with a different material that shouldn't cause the pressure sores that her current ones do. They also took another set of x-rays and found that Tori's Scoliosis remains about the same though it is at 66 degrees... It is really, really curved but at this point we wouldn't want to put her through another operation to insert rod and pins to try and straighten her back. She has been through enough already... The x-ray on her hips showed they are still in the correct position even with her tendency to turn her left foot and leg inward. She will need a brace of some sort to help on this front and she will be evaluated for it when we pick up her new foot braces.

Brendan is busy with school activities and Whitney is as well along with her strenuous dance schedule. Brendan has been spending alot more time with Tori lately and we frequently find him in her room watching movies with her. This is a welcome addition of course as Tori's current condition has always troubled and confused him... We know he loves and misses her so much and I still don't quite have the heart to answer truthfully when he asks me "When will Tori be better??". "Maybe someday" is always my reply even knowing the reality that she will never be 'better' in the sense Brendan wants her to be...

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.

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.

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.