They do try to prepare you for the most difficult scenario, just in case it actually happens, although none of it is very nice or easy. All you can do is take each step and each stage one at a time. Don't think too far ahead - the future is too hard to predict (for any of us really). It sounds like you are doing a fantastic job btw! It is tough for him but I reckon worse for the parents - you guys are the ones who will remember this period and the worry/stress - take heart that he will never actually remember this time.

Take care,