Still going

Feeling emotionally drained. We are over two years on the feeding tube. I looked at pictures today of McKenna in the nicu and thought, wow we have come so far. We are off the heart monitors, she has energy, we aren't cleaning up puke or watching McKenna retch throughout the day, it in the pics mck is eating. She was excited for her bottles. They would have to pull the bottles out of McKenna's mouth so she wouldn't choke she drank so fast. It's frustrating now I can't get her to eat, and I'd I do it is such small portions. It is frustrating I have to hook her up every night and that we have to plan life around a feeding schedule. It's frustrating I can't potty train because it messes up her bowel movements and at messes with her eating. Is frustrating she won't drink and in order for us to play outside I have to plan it around when we can give her syringes of water without it effecting meal times. I am exhausted and want to stop thinking about it all! Any time now, God! We are still waiting for yet anotherrrr healing.