Monday, August 11th through Sunday, October 5th

Hello again,

It has a been a while since my last update but as far as Tori's condition and daily routine goes it has been status quo. We were finally able to get Tori's next round of botox and phenol injections and her demeanor and comfort immediately improved as it usually does. We have her now scheduled for the next round of injections at the 3 month mark from this set she received.

Tori also had another appointment a Shriner's Hospital in SLC where we had her scoliosis or spinal curvature measured once more. Unfortunately it continues to worsen and it is now bent at a 74 degree angle.... So we now have a decision to make in regards to spinal fusion and the surgery it requires. Our dilemma is if we wait to long her scoliosis is most likely to worsen so the spinal fusion would have less of an impact and be more difficult. Tori is also becoming more uncomfortable and is often in pain when sitting with her head up in her bed or wheelchair. It seems her most comfortable position now is lying almost completely flat on her back. Our major concern is in regards to the 6 to 8 hours of surgery itself plus the two weeks of recovery time in the hospital. Tori would be at risk for an infection as the scar on her back will go from her neck to the base of her spine. The surgeons will also have to work around the baclofen pump catheter which is already placed in her spine. Tori hasn't been to a hospital for extended stay for quite some time and we all know how badly Tori hates being in one as well.... Maria and I also don't especially look forward to it either. But we will need to make a decision within a month or so. If anyone out there has knowledge or experience with spinal fusion please let me know by sending information to or posting it on this site.

Tori's ST and PT therapies continue during the week with Meredyth and Cari respectively. We are still working out a schedule with Jake and Timpanogos High School and hope to have it in place this week. We are also trying to schedule an OT (Occupational Therapist) to visit Tori and have him work specifically on her hands and control of them.

It has been a tumultuous couple of months for our family with Erick's recent death and Maria's father Rex's critical health condition. Maria's mother Lois spent about three weeks at our home as Rex had a 7 bypass heart surgery at the UVRMC located a few miles from our home. That combined with his diabetes caused kidney issues has made life extremely difficult for him over the past several months or more. I am very happy to report that they have now returned home to recover but will be traveling 90 minutes each way from Delta to Provo for PT and dialysis 3 days a week for an extended period of time. Please keep them in your thoughts and prayers.

There is some good news as my parents have returned from their summer in Minnesota and surrounding areas!! They have been greatly helping as they always do and now we have help in our daily routine again with work schedules, Whitney and Brendan shuttling and of course all of Tori's therapy sessions. It is wonderful to have Grandpa and Grandma back!! :)

I believe that is all for now.

With love,

The Schmanski's
Tim, Maria, Tori, Whitney and Brendan