Mariana, who survived a liver transplant as an infant, is doing so well now except that she won’t eat. Won’t even allow food to be put in her mouth. She has a severe oral aversion from the months and months of naso-gastric tube feeding. As her mother noted in her last post, Mariana hasn’t eaten since last August. We pray that she will overcome this aversion and start eating. Her mother did joke that her daughter probably won’t go to high school with an NG tube in, but it is painful all the same.
Noah’s mitochondrial disease has progressed and his intestines have basically shut down. His feeding tube (the abdominal kind) has to be connected to a drainage back all the time now and all of his nutrition comes from TPN via his central line. The only things he is allowed to have are liquids. He can enjoy the taste but they drain out immediately so they don’t cause him pain and leak from around his tube. This situation seems to be permanent and he and his family are trying to learn to live with this new normal. Obviously, this disease is ultimately fatal and it is painful for his family to watch him deteriorate and to have to deny him solid food (it can’t immediately drain out so it causes problems).
Please continue to pray for these two children and their brave families. As always, their links are in the sidebar under “Prayer List”.