On July 17, 2006, the Pediatric Developmental Specialist arranged for another hearing test and an MRI. On July 20, 2006, Kelli had a MRI actually looking for things like fluid, cysts, tumors, etc. The MRI showed that everything looked okay, however, there was a note made that she had a mild delay in myelin development. I was assured by several doctors that this was not a cause for concern. On July 31, 2006, Kelli had her hearing checked again and it was fine.
On Sept. 6, 2006, the Pediatric Developmental Specialist stated that she was mildly ataxic in her follow-up visit. By the end of September, I continued to press the issue that something was wrong. My extremely independent daughter increasingly wanted to be carried much of the time. Her walking was beginning to be much more labored.
On Oct. 17, 2006, Kelli had an initial visit with a Pediatric Neurologist. In that initial visit, he diagnosed her as having Ataxia (which means unsteady gait, however, it is a symptom of something more serious) and he expressed concern that there was something seriously wrong. He also stated that she had done an impressive job at compensating for her ataxia. Blood testing for diseases/disorders began that day.
Up until that point, her balance and walking were really her only two symptoms. However, at the end of October and beginning of November her eyes began doing something new. One eye would randomly move in towards her nose and then back. The weekend of Halloween is when other people really began to notice Kelli was having trouble with her eyes, she looked very weak and her walking was much more labored. This is also when she began to have tremors (shaking) in her hands.