Three weeks ago we took our 10 month old to a foreign country for an experimental medical treatment...

There aren’t supposed to be any treatments for HIE, a severe brain injury our baby suffered at birth… ❤️‍🩹 But three weeks ago we took Jordi for his first round of MUSE Stem Cells with @neorgana in Mexico. Despite a critical illness two weeks ago, we are seeing some pretty strong signs that the stem cells are helping his brain heal and form new connections. When we woke up this morning it was obvious that Jordi was uncomfortable. He was awake and wiggling and making noises. He was showing us that he was hungry. Jordi is G-Tube dependent, but this morning I decided to offer him a small bottle and to my utter surprise he immediately accepted it. He was more coordinated and enthusiastic while drinking than I ever seen him be. One ounce from a bottle might seem small — we take for granted how complex the act of sucking and swallowing is from a neurological standpoint — but this is the most that Jordi has ever taken by mouth. At our 8 month appointment with his feeding team we were told that because Jordi didn’t reliably take any amount of a bottle by 6 months, he now never would. We were told we no longer needed to keep trying. That news devastated me and coupled with a recommendation from pulmonary to cut out oral feeds (which has proven to be unnecessary because we have no evidence that Jordi aspirates and it didn’t help at all) I stopped trying to give Jordi any real oral experiences for months. Now I wish I didn’t. But it’s okay. Because here we are. Taking some big little steps. And that is all it takes. 🩵 #jordithehiero #hopeforhie #hieawareness #gtube #tubie