Daniel,
I come here often to get advice and not to feel alone in this. It is a such a rare fatal disease. When my Mom was diagnosed, I had heard of it, but I wasn't sure what it did. Now I have done tons of research and have talked to many people, I like coming to this forum the most. Everyone is very friendly and informative. Spend as much time with your babies as you can. I have 3 boys, ages 3 months, 5 years and 8 years. They are very close to my Mom and it was difficult telling them of her diagnosis. We didn't give them too many details, just that she talks differently because she has ALS. They asked, what's ALS, and I told them it is a disease that is not common and there is not a cure yet. But, we are Christians and pray for a healing everyday and a cure. I have told them to ask me anything they want and talk to us about their feelings at anytime. I try to be straighforward as much as I can. It's such a difficult thing....
Very sorry for you and your family.
Patty