Hello to all

Happy world Down Syndrome day to you all. And happy Twilight day to all you Twilight fans. Got my DVD already.

So it seems most people feel how I do about saying downs. Anytime they call Jax by anything but Jaxson its insulting. He has his own personality, likes and dislikes. If I want to mention something about down syndrome I don't think downs is terrible.

Anyway. Monday I take Jax to his hemo doc for the first time since our horrible hospital experience. My pediatrician has already talked to him about what she feels and what she wants to check. He has lost a little bit of weight but he's still 20.4 lbs which is huge for him. He's never broken the 20 lb mark in his life. So its not good weight, its all in his face and upper arms. His legs are still his little peg legs. My pediatrician doesn't know what a good way to fix his narrow SVC is. I told her if they can stent it in the cath lab that would be no biggy for Jax. She said she didn't think they could do it in the cath lab, that it had to open chest. Yikes, we weren't wanting that again quite this soon.

He did really well after his last open heart, so I think he would be fine, but you just never know, expecially with the heart. There's always that chance that they heart will be naughty and ECMO would be needed. We won't think of that. We'll see on Monday what they think. He's really not being effected except for the puffiness. But that is the main vein that feeds back into the heart, I want it working the way its supposed to.

Countdown is on, 12 days until vacation, wahoo. The bad part is, Carter's baseball games start the day we leave, and he will miss 5 games, yikes. I always forget that baseball starts so early in the spring. I have to go on vacation when my kids go offtrack so they don't miss school. So we are leaving Friday night instead of Friday morning so he can play his first game. Then he will miss the next four games. But we won't be thinking about that in sunny California.

First its Legoland and Sea World, then a quiet few days with family and to meet sweet little Zoey and her family. The beach of course, then off to Disneyland for 5 days.

Pray that Jax is not naughty so we can enjoy a much needed vacation.