We arrived a few hours after Noah flew in. He was sleeping, oblivious to what a big deal this was. It was late by then and they had a room for us right next door. The next morning the doctors came by, assessed him, and the next day we had a diagnosis. Here is an update I sent to a few family and friends from these days.
We have a diagnosis surrounding all his weird blood abnormalities! It’s called Transient Myeloproliferative Disorder (TMD). something like 10% of babies with Down Syndrome are born with it. It is just like Leukemia, except about 80% of babies with DS who have it naturally overcome it without any treatment. 20% will develop the real thing. Based on his numbers the hematologist said he likely will overcome, but they will be testing his blood counts on a daily basis. when his platelet counts get too low they will have to transfuse again and again. We feel comforted in knowing what lies ahead and that whatever happens the doctors here know what to do with him. Noah has had a few good nursing sessions now!!! We are still waiting for him to poop. there is no physical reason that anyone can see that is preventing his tummy from working. He is just slow. pray for poop! We are staying in the room next door which is so, so helpful! there are only two rooms here though, so if a baby with more serious problems comes in, we might get kicked out. Pray that doesn’t happen! I don’t want to see him have to bottle feed at night while I am somewhere else!!
we were on our way home friday night and saw the helicopter go over, i prayed for whoever was dealing with a situation that God would surround them all and His presence would fully be felt throughout recovery! Was that when Noah was airlifted? Prayers continue!