I just want you to know that we are working through all your comments, and we want to thank you so much for how much you care... just because. I also want to let you know that if you have experience with EB and are passing along suggestions to us (type of bandages, feeding suggestions etc), we are working hard to read and summarize the info and pass it along to the doctors. They are being very receptive to our suggestions. Don't panic! We are reading them - but with visitors, phone calls, pumping, feedings etc, it sure does seem to take a while. The comment moderation is on because of some past bad experience with some very horrible comments by a stranger who randomly found us after Gabe died. I'm just not willing to post them until I've read them. So, please leave comments! We'll get to them eventually, and they are such a blessing.
And for all you EB moms and medical peeps, please keep giving us advice. He's 8 in a million. We can all use the education. The doctors are just as interested in the suggestions as we are. THANK YOU! You are helping save his life.