Nevaeh had another swallow study last week that showed relatively no progress. Yesterday, we met with several doctors. They told us that we are basically waiting for her to "smarten up" and grow out of her swallowing confusion, which causes her to asperate. We had hopes that her upcoming palate surgery might help her to stop asperating, but it most likely wont. Apparently, even though there are obvious anatomy issues that allow fluid to get into her nasal cavity, the fact that she has cleft palate has nothing to do with her asperating. We found out yesterday that 98% of cleft palate babies do not need a feeding tube. SO this is a separate issue. I asked the doctor if they ever had kids that NEVER grew out of it. He said that they do, in rare instances, but those kids do not look like Nevaeh. The kids that don't grow out of it are severely developmentally challenged. And Nevaeh is doing great. She is a little behind developmentally, but ahead of where they were expecting her to be. So that was good to hear! But it looks like it will be awhile before we are rid of this G-tube. Meanwhile, we are taking baby steps, with the help of a feeding therapist, trying to teach her how to swallow thickened fluids that she doesn't asperate.
Yesterday, we met with the surgeon again & hearing doctors. Nevaeh has fluid in her ears (very common for cleft babies). So they will place tubes in her ears when she has her palate surgery. We are waiting for an exact date, but it will be sometime in May. The surgeon was really disappointed in her scar from her lip repair. Apparently, Nevaeh scars a lot worse than most people. So he definitely wants to do another surgery in the future on her lip to help it look better. In the meantime, we are going to be massaging it, and applying some perscription scar stuff to help it. It was wierd yesterday to hear everyone talk about how bad her scar was. I don't even notice it anymore! But we'll do what we can, because I'm sure Nevaeh will care a lot about that someday!
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