Our son, Kees(pronounced Case) was born with Apert Syndrome this June. He’s doing just amazing, but my wife is struggling with his future and more importantly with the balance between what doctors want you to do and reality. My brother, who recently lost his face in a fire accident, spoke to one of his nurses about my son. The nurse suggested About Face as support for us, so here I am. My wife is adverse to this as “it’s just another thing we need to deal with” We currently have about 2-4 different appointments per week with specialists and have at least 5 surgeries upcoming. The first will be a complete cranial vault reconstruction at 6 months of age, which will be late November. I guess that about it.
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