One More Week

Like we expected, they want us to turn the screws for one more week. Her X-rays looked really good and her airway has really opened up. In fact, she’s at the perfect normal stopping point, but because we want to really really really open the airway, we’re going to go a bit beyond normal. It’s also possible that her jaw will not grow with her, so the farther out we go now, the longer we can go before another jaw distraction.


We also learned that they will NOT scope her before removing the screws when we’re done so we need to figure out how to change the gtube without anesthesia. Our big question right now is whether or not we should try out a different style called an AMT mini one that has a balloon instead of a stopper like the Bard. The balloon is flatter so we’re hoping we wouldn’t have the same issues as before, but they’re consulting with GI to see what he thinks. Hopefully we’ll know by tomorrow.


One thought on “One More Week

  1. Looking great!! I don’t know Evie’s GI issues, but I can say that we love our son’s AMT Mini One. We’ve not had any issues, though he doesn’t try to pull it out, so that’s always helpful 🙂 We change it easily at home whenever needed. A lot of other mamas on various FB forums also attest to their AMT Mini One love. One of my friends who I greatly respect loves her AMT Mini One non-balloon. The only difference is it only gets changed every 6-12 months and has to be done by a doctor. Just something to think about…because you don’t have enough on your plate 😉

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