We have been focusing on keeping Tori as healthy as possible over the past week because on Tuesday she will have the tendon release surgery completed on her feet at the Shriner's Hospital in SLC. She has done well and hasn't been ill at all over the past seven days. She is also fully breathing on her own again during the day and night and typically maintains an 88-98% blood oxygen level. We are being sure NOT to mention anything about surgery or visiting a hospital while around Tori... My parents, Brendan and I have been taking good care of her lately as Maria and Whitney are still in NYC. From what I have heard Whitney has made the top 10 finalists for the Outstanding Dancer award of the competition and the various teams from The Dance Club have fared nicely as well. Considering the best dancers from all over the country are participating they all did a marvelous job!! Congratulations to them all but we are sure ready for them to come home.
Tori had a great 4th of July as she watched a fireworks show in our backyard. She liked the various lights and colors but wasn't as keen on the noisy fireworks... She has been spending more time in her wheelchair lately and I have held off feeding her as much as I should for fear of her aspirating and getting ill again before the surgery. She will be in foot casts for 6-8 weeks after the surgery so that should be interesting. They are also going to create splints for her feet and hands while she is under anesthesia. Tori's hands and fingers seem slightly less rigid after her baclofen pump adjustment. I'd like to see more improvement of course and I'm sure we will be increasing the amounts of the 'bursts' she is now getting every 4 hours.
Meredyth continues to work very well with Tori doing ST (speech therapy) every Tuesday and Thursday. She is working hard to get her to drink from a straw of course and now that Tori can actually blow air on command somewhat consistently we are hoping the inhaling action will begin to occur. Tori always can always indicate what she is tasting through flash cards at least. I'm in the process of calling all of the available PT (physical therapy) providers through Tori's new primary insurer. I hoping to have one or two selected this week and then we will probably be in a trial scenario until we find the right therapist.
On Wednesday morning Tori became ill once again with vomiting, a fever and I'm sure she was feeling quite miserable... She must have aspirated again as her blood oxygen level plummeted to 75%. So we have had her on oxygen again all during this week and it wasn't until today that her lungs were finally recovered enough to remove the assistance. She is now maintaining 90-95% once again. Tori seems to have a pattern of getting herself very agitated and 'worked into' being ill just prior to her having an appointment at the hospital. She has timed it just before several times now so we are being tight lipped around her in the this regard moving forward. Her next big date is July 10th when she heads to the Shriner's Hospital in SLC for tendon release surgery on her ankles and toes.
We didn't change her Thursday appointment for botox and phenol injections despite how she was feeling. Maria and Grandma tool her to the PCMC in SLC and spent the afternoon there with Tori since they have to medicate her prior to the injections then wait until she comes out of the anesthesia in the recovery room. Tori also had her baclofen pump refilled and reprogrammed to 'burst' mode which means she will get a larger dose of baclofen every 4 hours starting at midnight instead of the steady flow she was receiving beforehand. Her arms and upper body is already has much, much less tone and we'll be watching her closely trying to ascertain if the 'burst' mode on her pump is working any better. It may take a couple of months when the botox begins to fade before we will be able to tell anything. If she eventually builds an immunity to botox we will all be in big trouble...
Since her injections she has been sleeping very well during the night and is in good spirits during the day as well. She spends the afternoons in her wheelchair as normal and is outside on the deck when it becomes shaded in the backyard. The temperatures are now reaching 95-100 degrees outside so we are waiting until later before heading out. Tori, Brendan, my parents and I went to see the new Disney-Pixar movie "Ratatouille" today and all of us thoroughly enjoyed it. Tori remained awake, attentive and very aware throughout the show.
The past several weeks have been emotionally difficult for myself and my family but we have had more heartfelt and kind response via email, telephone and verbally than is imaginable. I've had strangers approach who actually know me from the site though I don't personally know them and offer their condolences, support and tell me of the impact my family has had on their lives. Thank you all so much!! I've also had numerous new emails from other families with similar situations, difficulties and feelings as well. Before our unfortunate introduction into our situation I never even really knew they existed but I should have known regardless.
Tori is actually doing quite well lately as she has been sleeping comfortably throughout the night, has been rarely agitated and normally has a calm and even temperament. Caring for her while she is in this state is so much easier than if she is completely agitated and fighting you every step of the way... She has been enjoying her evenings outside on the deck and we even took her shopping again to Costco and Target yesterday. She is very tight once again in her upper extremities. I guess she is never 'loose' per say but you can definitely tell when more botox and phenol injections are needed and that time is now. Tori will be getting more injections this Thursday morning up at the PCMC in SLC. She is also due for a baclofen pump refill and possible adjustment to 'burst' mode but I am unsure if that is on our agenda for this trip.
Tori continues to eat small amounts of food but we haven't been able to increase the amounts as fast as we have wanted. We won't stop working on this of course. For the first time ever, Tori actually blew off a tissue placed over her face completely voluntary and on her own. We have been trying this for over a year and she finally did it!!! Meredyth placed a tissue over Tori's face and instructed her to take a deep breath and blow it off and low and behold she did it. She is even blowing through a straw somewhat if she can lock her lips around it. Blowing and sucking through a straw remain a couple of our top goals for Tori. And so the work continues.
You don't know me, but just like you've become Tori's Dad over the past 2 years, I have become Luke's Mommy. Luke had a near drowning accident August 30, 2004. I read your entries weekly and I hear your pain, I know this pain it is extremely excruciating at times.
I just want to let you know I pray for you and Maria often, also for Whitney and Brenden, I pray that God will give you His amazing strength to make it through each and every day. Of course I keep Tori in my prayers always! I realize that nothing I say can make the unrelenting pain that you feel go away, but I just wanted to let you know that I will never stop praying for your family.
Love in Christ,
Luke's Mommy Sue
Today marked two years since Tori’s near drowning when her life was drastically altered as well as the lives of those around her. The pain and sorrow of today is equal to that of June 19th, 2005 and has not lessened. I have always heard the saying “Time heals all wounds” but I am certain that this cannot be true because no amount of time will heal the great sadness and pain continuously experienced from our loss. It is constant and will always remain. Two years have passed yet tears still flow each and everyday at the thought of our loss, the obstacles and challenges now faced and the memories of our beloved Tori as she once was. I expect a lifetime of this as well. Tori is so greatly missed by us all and yet she is still with us of course. But at every dance recital, every report card viewed, every letter from colleges offering Tori scholarships, every time we see her friends laughing, full of life and enjoying their lives the impact of what we have all lost becomes first and foremost in our minds. At this point I can honestly state that I can only view pictures of Tori and remain composed. Videos of Tori as she once was are still far too emotional and painful for me to view… Perhaps someday I will be able to watch them once more while accepting the fact that Tori will never be that person again. But I can’t right now.
The toll on our family is immense as we continuously battle depression due to not only our loss but to the always present and never ending burdens and hardships placed on our entire family. We are now far from the traditional family we once were and long for the days of past. There is nothing ‘easy’ about our lives at this point and great sacrifices have had to be made by each of us but the unconditional love and devotion for Tori is always present as well. And for as long as she remains with us we will strive and do everything humanly possible to improve her quality of life. The challenge is truly daunting and there are no guarantees that we can change anything about her condition or life as it stands now. But to not try is completely unacceptable. Tori’s strength and determination will inspire and guide us in helping her recover.
I'm happy to report that Tori has finally stabilized and thankfully no longer requires oxygen. She is maintaining low 90's on her blood oxygen levels even when while she is sleeping. She has also slept entirely through the last three nights and that is a very welcomed trend that we have certainly missed over the past couple of weeks. Maybe her latest improvements are an attempt at a Father's Day present and if so I'll take them.
I decided not to dwell on the two year anniversary of Tori's injury on Father's Day this year since the real date occurs in two more days on June 19th. I actually tried to enjoy today with my family and I'll wait until Tuesday to share my thoughts and reflections over Tori's tragedy and the difficult past two years. Today much of my family arrived at our house to spend the day. My brother Todd and Laurie came with most of their kids and my brother TJ's wife Lorrie made it along with the triplets. Grandpa and Grandma Schmanski were of course present as well. Maria is actually taking a weekend break in San Francisco at the moment and was not at home today. Tori spent the day in her wheelchair hanging out with all of us and was very calm and aware the entire day. We ended up going out to eat at a local Chinese restaurant and Tori sampled some tiny pieces of beef and chicken, some watermelon, diet coke and some ice cream to top it all off. She did the best with the ice cream and had numerous bites of it. The restaurant was also very busy which helped keep her attention level up with all of the activity around her.
After everyone left Tori, Whitney, Brendan and I went for a nice late afternoon walk. Tori seemed to really enjoy the sunshine, trees and breeze in her hair. She hasn't been well enough to be outside for a while so I'm sure it was a welcomed change for her. It is supposed to cool off this week so we'll try and make the walk a regular occurrence if possible.
Thanks again everyone for all of the love, prayers and support offered to Tori and our family. It all provides us a great deal of much needed strength and I don't where we would be without it.
Tim and Maria
Just wanted to pass you a quick note to let you know you are in our thoughts. We sincerely hope that tonight you will both have some peaceful rest. Much love to you all - Renae and the rest of the Tarino family!
There are not too many positive aspects to report on for this update. Tori became ill last Thursday and she vomited during most of the afternoon and evening. Her temperature reached 103 degrees and she hardly slept that night. Her blood oxygen level also dropped into the high 70's range so we had to provide oxygen assistance of 5 liters to help her maintain low 90's readings. The next day her temperature and temperament were back to normal but she has remained on oxygen until now. She had similar bouts with a high temperature over the weekend and she seems to bring it upon herself during highly agitated periods. Then it takes a full day and alot of medications to get her calmed once more... We've been slowly weaning her off of oxygen again and she was down to 1 liter last night which maintained mid 90's on her blood oxygen level.
Tori hasn't been sleeping very well at all which means she also needs alot of attention at night unfortunately... Caring for her effectively when she isn't sleeping is a huge challenge for Maria and I because after a few nights of doing it we become exhausted and have to then heavily medicate Tori so we can attempt to rest as well. It is not the desired solution or pattern that we want but that is the only option we really have...
Last Thursday Tori had an appointment at the PCMC (Primary Children's Medical Center) in SLC which we had to cancel since she became ill. We have since cancelled a rescheduled appointment as well since she is on assisted oxygen and still not feeling up to par for a trip. We are now targeting early next week for the appointment in which we will refill her baclofen pump and try the 'burst' mode of the pump as well. Tori is extremely tight in her muscles once again and it is making her very uncomfortable with higher levels of agitation as well. We must either get the baclofen pump working to alleviate some of the tightness or begin to explore other options. She is also almost due for more botox shots which will only provide temporary relief.
I spent Wednesday evening visiting Chelsea and family at the ICU in the Utah Valley Regional Medical Center which I am unfortunately well acquainted with. Marilyn posted an entry on the site in regards to an accident Wednesday morning and it actually took us a little while to comprehend exactly who Chelsea Jensen was. We eventually figured it out and Chelsea's mother is a friend and responsible for all of the beautiful Pray4Tori bags created in the past. To meet her again and to meet Chelsea as well in the ICU was moving indeed and I am so thankful that she is recovering so well from an auto accident that statistically should have taken her life. Chelsea was ejected from a car following a high speed rollover and it truly is a miracle she escaped with 'only' a fractured skull and road rash on her entire backside. She has 40+ staples holding the three fractures in her head together but her brain swelling has stabilized at this point so no shunting should be necessary. She is also coherent and talking and even told me "I love Tori". In my and many other's opinion she is the luckiest girl on this earth and our prayers and thoughts are certainly with her and her family at this time.
So tonight's update will be very different from those in the past because based on this incident and the many, many others that resemble it which I view and read everyday on the television and in the newspapers, I am finally going to speak about the details surrounding Tori's accident. Thank you so much Marilyn for giving me the courage to finally do this and I honestly feel I have been doing a great disservice to the literally thousands of young kids and their parents who monitor this site regularly. I am deeply sorry for this. To quote our beloved friend Marilyn directly: "Life changes so fast. I would like to tell you new teenage drivers to please be careful and don't goof off behind the wheel. Very serious things happen that change lives forever! Drive safe please." Today is the day and if the following information can save just one family from enduring everything we have gone through it will be very well worth it.
Last Thursday proved to be a very rough day as she began vomiting in the afternoon and well into the night... Her temperature also reached 103 degrees and we had to place her on 3 liters of oxygen to keep her blood oxygen level above 90%. By coincidence Tori was also scheduled to have her blood taken and it took her nurse Myra numerous attempts before she actually was able to take the blood samples. Myra then called us within a couple of hours and the results indicated Tori was indeed fighting some sort of infection because her white blood cell count was high and other parameters were as well. We called the PCMC and were tempted to take to the hospital but decided to give her the night at home after she finally calmed down and went to sleep. We gave her some pedialyte and her temperature also dropped to normal levels. Friday morning she was feeling much better as we were able to take her off oxygen and temperature remaining normal as well. She remained just fine from that point until now so we are not quite sure what exactly was going on with her over that time.
Whitney and Brendan also left Thursday with Grandpa and Grandma Schmanski for a long weekend of camping and water park fun in Idaho. All of their cousins also went and they had a wonderful time. School is now out and summer vacation has begun!! :-) I also left the house Friday evening for a 3.5 hour drive to St. George, Utah for the golf tournament benefiting the Tori Schmanski Fund and the Spinal Cord Society. I would like to thank Dan Thomson for putting the tournament together, the St. George Golf Club and to everyone else who helped out at the event. Of course I would also like to thank all of the golfers, sponsors and prize donors as well. There were over sixty golfers participating and the local newspaper also stopped by for an interview and pictures that appeared in Sunday's Spectrum newspaper. I then drove home late Saturday afternoon to spend the rest of the weekend with Maria and Tori.