Yesterday's visit at Ciny for Daniel went fairly well. He actually was a rockstar and did fabulously well. We only had a few moments of crying when we first got into the room but other than that he was his charming self and won everyone over with this smile.
So what did we find out? Well, the good news is that Daniel's airway is doing extremely well. It is growing with him and is now at a 5, which is an improvement from the 4.5 six months ago. The Doctors and the nurses were extremely happy for this and said everything looks really good. His graphs have completely healed over and they don't want to see us for a year! So that is the good news.
The so-so news is that Daniel's GI scope went ok but they did have to dilate him in two sections again. This has been pretty typical but this time the top section needed to be dilated a bit more then before and was a little concerning for his Dr. The reason for the concern is that the top area that is narrow is at the opening of the esophagus making the ability to eat a bit more challenging for Daniel. The Dr.'s concern is that since we are working so hard at getting Daniel to be an orally eater that the narrow opening would limit our success. The good news was that the narrowing was very easy to dilate and open and now we must hope and pray that it stays open and does not narrow back down too much. For this reason he wants to see us back sooner than a year. He first said six months than he said at the end of the summer so I am not sure what the exact time frame is - three months or six months. We were sooooo hoping that we would get a year time frame from Daniel's GI Dr. too but it did not happen. So that is the So-So news.
Oh Well!! All and all the news was overall positive or at least predictable - just like Daniel!!
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