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”.
Thank you for the updates. I will be praying.
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I will pray for those two sweet kiddos.
I recently found a website all about kids who don't eat including feeding tubes that might be helpful to the parents. http://childrenandbabiesnoteating.com/index.html It has a lot of information on why kids don't eat and what to do about it.
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Lord have mercy! It teaches us to be very thankful for the simple things in life, like eating.
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Thanks, Matushka! I'll put little Noah on our prayer list — thanks for bringing him to our attention.
And thank you for your prayers for Mariana! We are so grateful that this is not a life-threatening situation (what did they do before feeding pumps??? Had she been born fifty years ago, there would be no transplant and even then, how would she eat? She would never have survived to the ripe old age of nine months. Thank God for modern science!) but you're right, it's sad and frustrating nonetheless. We so appreciate prayers.
And Beth — thank you!!! I'm going to check it out right now!
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