caterina

2006: Meeting More Milestones

As 2005 came to an end, we were reminded that Cati’s health was still fragile. She contracted another virus (RSV) and we spent Christmas in the hospital at Sloan Kettering. She recovered quickly from that episode and we welcomed 2006 with renewed faith. Early in the year she began taking steps for the first time; she was 2 years, 7 months. Her strength grew tremendously, and her agility improved substantially. As spring came, her vocabulary was broadening.

In April of 2006 she had surgery to correct strabismus in her left eye and we received confirmation that she was legally blind from that eye. Hurler Syndrome can impact vision, and in Cati’s case, the doctors found her to have retinal pigmentation in the left eye, an uncorrectable condition which will impair her vision during her lifetime. Fortunately, her right eye is in pretty good shape. As with all else, this did not seem to stop her. She was determined to do everything she was asked by her therapists and by all those who surround her. Summer came and she enjoyed a visit to the North Carolina beaches. Watching her walk barefoot on the beach only 2 years after her life-saving transplant has been one of the most glorious experiences in all our lives. She got a good report during her 2 year post-transplant check-ups at Duke in August, and in September, amazed us all as she entered pre-school, with a force and determination that leaves us all amazed. She is now talking in 3-4 word sentences; she walks, tries to jump, and is almost running. She participates in playground with the other children, and she is a socially engaging and joyful child.

From a health perspective, she is still on immuno-suppressant medication, along with a whole host of other medicines which are needed until she is off the immuno-suppressants. Her hospital routine is now every other week. We are hoping that over the course of this year, she is able to come off a number of the medications she is on. This will be a slow and highly monitored process. For now, we delight in her amazing progress, her sheer determination, and the fiery light in her eyes which illuminates all those who come in contact with her.