Below is a "video" that was done a few years ago for APFED. It is a montage of photos of kids with EE that is available on YouTube. My son is pictured in it a few times. See if you can spot him.
Yes, the toothless kid pulling his shirt up to show his belly is my son, as is the split screen of the skinny kid with the PEG tube (the first surgically-placed tube) and the boy sitting on an exam table with his Dr. The toothless picture was just after getting back from the hospital when he had his mic-key button (type of G-tube) placed. They removed his loose tooth for him while he was under so the tooth fairy visited the hospital and gave him a silver Liberty dollar (one of the newer ones, of course).
We've come a long way from then. He was only getting the enteral formula back then, but now, 5 years later, we have enough foods to allow him to eat 3 meals a day if he can handle it. They might not be exactly what everyone else is eating, but thanks to a lot of hard work and researching products, recipes, etc, they're pretty darned close at this point. Hopefully we can get to the point where he will have his tube removed. That is the goal, and it is a realistic one. My personal goal is to have it out by the time he gets into high school, which is only 2 yrs away. I think we can do it! :-)
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