Hi J.,
Although I am only grandma, I do understand what you are going through. My son and daughter-in-law have 5 children ranging in ages 10 to 1. They live around the corner from us and I am very involoved with them and helping in their care. The 2 yr old has Down Syndrome and has had multiple surgeries and constant doctor appointments and isn't done yet. She sees speech therapists and physical thereapists as well. Every time I turn around she is going to another doctor or specialist. I attend almost all her doctor apts, have spent hours and weeks in Kansas City for her apts/surgeries, etc. We have lost her twice on the table during surgeries, but she is a trooper and pulls through. She no longer has her G-tube and is finally eating well and gaining weight, although she remains small for her age. Her 1 yr old brother is bigger then she is. If you haven't done so already, you might want to check into Rainbows United. They offer all kinds of help and they can direct you to so many helpful resources. We would have been totally lost without them. Through them we were able to receive some in-home nursing when Daytona was younger, and they even qualify to have someone come in and sit with the kids for a couple hours here and there so they can get out and take a break. At least that would be a place to start and go from there. I wish you all the best. I know it is rough and sometimes you feel like you just can't go on and need a break, but these little gifts from God are so precious! Take care and God bless you and your husband as well! V.