Here are a bunch of photos to bring everyone up to speed with how things look. Today Evan is doing well. He isn’t smiling a ton but he doesn’t appear to be in pain – just kind of tired and chill and doesn’t mind vegging out. Yesterday Evan got a PEG tube placed, which has an internal and external bumper. It also always has an extension attached. So for the next 12 weeks we will have to manage a toddler with a piece of tubing always hanging out of his abdomen… begging to get caught on something or pulled or pried open. We will need to go shopping for 24 mo onesies as I think that might be the only way we can make it through with some sanity. I feel bad for people who have to have it even longer! We will need to come back in 12 weeks and the surgeon will take out the PEG and put in another button like he had before. And then after that we can change them at home like we did before.
Here are some photos from 02May that I thought were too cute to not share. We normally don’t put him in one-piece outfits because we need easy access to his feeding tube port, but I saw these overalls in the closet and they were practically begging to be worn. I think he knew how cute he looked. Funny how things change with a surgery! I think denim overalls will give his tube great protection.
Here are photos so far from Cincy.
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