we were in the same boat you're in 6 years ago when our first grandson was born. we live in va. thank goodness your grandson was diagnosed properly and quickly and medications were began (i presume meds were started, weren't they). e-mail me anytime and we nannies will discuss our grandsons. it scared us to death when Jess was diagnosed at 3 days old, but believe, the life of a child with cah is not as bad as you think, or have heard, it will be. Just thank God that your grandson survived and was diagnosed early and his genetic illness is not worse. take care. i look forward to hearing from you.