Nora Update Email #5

Hello Everyone,
Well Nora didn’t get to come home last week :(

She’s still very stable and doing well but they had to adjust her feedings. She was doing great with the breast milk until the doctors increased her feedings allowing her to eat on demand and then it was just too much on her little system. They suspended her feedings for a couple of days to give her system time to clean itself out and put her back on the TPN (the medicine that substitutes for food but not good for her). They resumed her feedings yesterday through her feeding tube instead of orally with a pre-digested formula. She’s still receiving TPN but the plan is to decrease the TPN again and slowly increase the formula. She is happy and content now that she’s getting food in her tummy again.

Our doctors here are consulting with Shands Childrens Hospital on her treatment. They were going to send Nora down there for an evaluation today but that has been postponed for a couple of days in hopes that the smoke from the wild fires that is closing portions of the highway will clear up. In addition to Shands, we are communicating with a doctor in Boston who specializes in short bowel syndrome and a new treatment that combats the bad side effects of TPN. We are very hopeful for our little daughters recovery and feel that there are other options to be explored besides a transplant that will result in a better quality of life for our little sweetie.
We appreciate all of your support and love. Please keep up your prayers and positive thoughts for Nora.

Thanks!
Montana, Sarah and Nora

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