Thursday, October 2, 2008

two steps forward - one step back


All through Melyssa's progress milestones in one area have resulted in a step back in another area. For example, Melyssa used to have a problem with drooling. There were days and days when either we would keep her in bibs or her shirts would get soaked. Looking through pictures of her until she was almost five shows evidence of this problem. There were times she would be able to remain dry, but as soon as she started walking, the drooling was back, or she would master the ability to differentiate between two colors (by pointing) and her shirt would again get soaked. This would come under control again until the next milestone, then it would be back, usually to a slightly lesser degree. This was not just true of drooling, but in all areas of her development.


When Melyssa was roughly two we started in on some intense testing, MRI, EEG, all the blood work we could do, and the tests all proved normal. A normal diagnosis should be good news, but for a parent looking for answers it is just another dead end. Just this past year we got hope from a Pediatric Genetics Specialist that we would finally have some answers. He was pretty sure that Melyssa had Langer-Giedion Syndrome, a rare genetic disorder, the test results showed that this was not the case. We are pretty sure that Melyssa does have some type of chromosome or genetic disorder, but we might never know.

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