Scoliosis:

Katie has been followed by Dr. D. Hedden at Toronto’s Hospital for Sick Children (HSC) regarding the extend of the scoliosis. Her back has two  curves totaling over 90 degrees. In addition, the lower portion of the spine twisted adding to the complexity of the scoliosis. The problem started when Katie went through her growth spurt entering puberty at the tender age of eight. Puberty was early due in part to the medications (see Seizure disorder) that she has been on for most of her life. The X-rays of her bones confirmed the physical evidence that Katie has nearly finished her growth.

The scoliosis has made it uncomfortable for Katie to sit upright for any length of time. Her wheel chair had been modified to allow her to lean back at roughly a 65 degree angle to get her through the school day and accommodate transportation. We have several stations set up in the home to provide different positions, but her favorite position is laying on her side. Even when lying on her side (her favorite position), frequent position changes were required.

Surgery was discussed and it was understood that the time was right. Very little to no growth was expected and the sooner the surgery was done the less work would be involved in correcting the problem. The more time that past the greater the scoliosis would become. The curve is not to far gone and excellent results could be achieved. Pressure on the lower lungs was a concern as would be pressure on other organs at some future time if untreated. Sitting in an upright position was the main reason that the surgery was recommended, and it was suggested that without it a time would come that she would not be able to sit period. Dr. Hedden discussed the other issue affecting Katie’s ability to sit. There is a problem with her hips and with hamstrings that are two tight that will be fine tuning required in the future.

Time leading up to the operation covered the Christmas holiday season. The operation was a constant distraction and played into many holiday plans. Katie’s clean bill of health was paramount but also high in the families agenda was ensuring this was a specially enjoyable time for her. The thoughts of "What if" entered our minds as the day of operation neared. We strengthened our resolve by reinforcing the good to come of the operation and the alternative future for our young daughter if we did not go through with the it. There really was no choice.