I'm sure you will get the chance to go at some time - you MUST. I suggest you look into places that will grant wishes. I was offered such a trip at one point - before I had been able to take Ryan. And I wanted to take him SO badly (We had our first trip with our 2 little boys booked when Ryan got sick at age 4). When he was in a coma then - I found his bag all packed (by him) with his swimsuit, a Mickey Mouse etc in it. That just about killed me.
But when I was offered the trip - it was the week that Ashley was due. And the deal was - they would take him there and back in the same day. And none of us could go with him. They had nurses, drs and firefighters going. I just wasn't comfortable with it. But 2 years later - my mom (now deceased) stepped up and paid for herself, Ryan, Ashley & I to go (we had already taken Brandon). & I took him every other year after that.
The weepiness is something we see all the time. We just keep a large piece of gauze around it. But the "shading" you describe is not something I've seen before. Perhaps because she is smaller? Ryan's is not a button. He only got his about 4 years ago. We used a nasal gastric tube till then. Weird, I know, but I was trying to avoid surgery.
If you're in doubt - take her to the surgeon and have it checked out. Ry goes back fairly often. His tube gets clogged or displaced at least every couple of months but its a quick fix.
