I am praying for you all. I know a bit about what you're going through right now. Over thirty years ago, we had a baby, a son, born with Downs Syndrome along with some other serious birth defects including digestive problems. His name was Michael and he lived to be six weeks old; he died right after a major surgery.
On another note, my husband's niece had a baby a year and a half ago. They diagnosed the baby as having Downs Syndrome while she was still in the hospital after delivery. The baby had so many of the physical characteristics. After extensive tests and several days later, they determined that they had been mistaken.
In both cases, we all just determined to take the babies home and love them. I will admit it was a shock to us all in both cases, but we just took one day at a time. Of course, I always asked God for healing, and I realize now that His will is best. I also realize now that my health was not strong when I became pregnant with Michael. While we can't afford to beat ourselves up, we also need to realize not necessarily everything rough that comes to us is God's fault. He can help us go through our trials and come out stronger on the other side, though. Also, there's the aspect of understanding that what we see on the exterior of any person is not really always what is going on on the inside of that person.
I have found that the healing God provides surrounding lifelong severely disabled babes/kids/adults is the healing that happens to the hearts of those who come in and out of the lives of the disabled.
God's lil Angels in a literal sense.