Yes, that is what I feel like. Kasey came home from taking little Mya K to the dermatologist today. We thought she would just go and come home with some cream to put on her little "baby acne". and be done. Oh heck no, we got the diagnosis of
recessive dystrophic epidermolysis bullosa. It is actually what caused her intestinal atresia, which answers the questions we had about that, however, this is a disease with no known cure, and different levels of severity. The recessive is the most severe. We do not know what her future holds at this point.
If you read too much on the web, and look at too many pictures then it will make you very depressed. That is almost where I am at, but I quit looking when I got to the headache. It sounds like she will fight having "blisters" that scar and are painful. Toenails and fingernails that might fall off. uugghh.
TMI....enuf for now.
Please Dear God, be with our baby Mya~ you have been thus far and I know you will not leave her side.
Amen
Goodnight.
Nawna
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