Back in the first post I told everyone a little bit about our family and Kai's disease. Since then the posts have focused on the fundraiser. I would like to take a step back and focus a little more Kai Kai and his needs. Kai is a very sensitive, kind, and loving little boy. He is so quick to forgive those who have hurt him physically or emotionally. Even still I have had a hard time giving him the care he needs to maintain a good quality of life. This care includes physical therapy, wearing of braces, doctors visits and daily stretching (by me) in order to prevent contractures. For the last year and a half I have been living in denial. My thoughts have been that if I just ignored the fact he is sick maybe it will magically go away or at least not get any worse. After seeing him suffer over the past few months with a great deal of pain, we have decided that living in denial is causing more harm than good. So we are taking the steps necessary to help Kai Kai maintain his quality of life. Right now he is still walking but tires very easily and if he over does it he has a lot of pain. Hopefully by getting him new braces and getting him back in physical therapy we can help him at least overcome some of the pain. We also need to take him to see Dr. Carsten Bonneman in Philadelphia, who specializes in collagen VI disorders.
One last thing, we have been completely overwhelmed by the amount of concern and love that has been shown to our family at this time. THANK YOU ALL SO MUCH. We hope to see everyone this Saturday!!
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