Quick update and I'm also hoping to get some pics up tonight...
Jonah had 22 oz on Saturday with 2 oz solids.
He had 19.8 oz yesterday with maybe an ounce of solids.
And he ate 20.5 oz today with NO SOLIDS.
When we were really struggling with solids before this past week, he would keep his mouth clamped, but he would usually loosen up a little for about a half an ounce or ounce of food, and I could work it in that way.
Then, he started opening his mouth for it, and I thought we had made a breakthrough.
NOW, he not only clamps his mouth even tighter than before, he's also learned that if he shakes his head back and forth, he can avoid the spoon completely. And I don't push it. One, because there's no way to get it in without holding him down even if I wanted to. And two, because I don't want to create yet another food aversion.
So... I'd say 99.5% chance we ARE getting the g-tube. I guess I'll know more after Wednesday morning, but the more Matt and I discuss it, the more we feel it's what Jonah needs. He's just not picking it up nor is he showing ANY desire for solids. Twenty ounces is just not enough to sustain and grow him.
So now it's...
Do we do it here at Brenner's, trust that God will provide very humble, compliant doctors, educate them ourselves and just have them contact doctors who've done it before?
Do we go to Chapel Hill where they have one doc who has some experience with EB kids (vague and limited info on this one... have to check into it)?
Or do we try to do all this in Cincy? (Many days away from home, out of town dressing changes, many hours of driving either way, Jonah in a car seat for many hours post-operation, Matt with very little time off etc.)
Lots to figure out... trusting that God will make it clear. Feeling like we're probably in a time crunch and things need to start falling into place really soon.
Haven't gotten an update on Tripp yet. Worried, praying, hoping for good news really soon. Will pass it along as soon as I hear something. You can follow his Caring Bridge Site Here.