I’ve been a terrible blogger lately. I’m sorry.
Ava had a week of appointments this week. We have successfully restarted G tube feeds again. She is continuous 21 hrs a day with one mini bolus. The trick is keeping her blood glucose up, and we are still walking a fine line with that.
Some of her GI biopsies came back. Ava has been diagnosed with Eosinophilic Esophagitis. She has eosinophils in her colon as well. After her special needs and gastro doctors discussed it, they decided not to treat it right now. We are watching it. Our first priority is glucose levels. She’s on Peptamin Jr, which is a good EE formula anyway. We can’t afford to lose the complex carbs.
I had a heart to heart with genetics. They fully believe there is something more than her Mitochondrial disease going on with Ava. They have voiced this several times. She is constantly being poked and prodded. Her results are always “weird”. I’ve asked them to put further testing on hold for 6 months. Ava needs a break.