Friday, June 18, 2010
In case you're wondering, here's how a g-tube removal works: They just take it out, slap a dressing on it and tell you no food or drink for 4 hours. Then you change the dressing and monitor for leaks. The g-tube site is like a piercing in that it closes up on its own when you don't have anything in it. Because the tissue it goes through is very blood-rich, it closes fast. For some people, it doesn't quite close right on its own and they do a small surgery to stitch it shut. Blaise's appears to be closing appropriately on its own.
So that's it. It's gone. No holes in my kid other than the ones she was born with. My mom asked me last night how I felt about this and the truth is, I'm not sure I really feel anything except maybe a sort of quiet pride. I didn't really mind the g-tube. It was the first thing I learned to take care of after Blaise was born and the first aspect of the whole thing that I made my peace with. It wasn't a troublesome or dangerous thing, like the central line was. It was a mild annoyance with of couple of actual perks (like "venting"). So I'm not wildly overjoyed like I was when the central line came out. I'm glad the tube is gone, but I think I was taking it for granted that it was going to go someday, if not yesterday, then in 3 more months, or 3 more years or whenever the time was right, and in the meanwhile, it was no big deal. The most salient emotion for me is pride, but I've been so proud of Blaise her whole life that yesterday didn't feel all that different. My girl is a champion and a rockstar. She always has been.
Thursday, June 17, 2010
So she seemed a little confused and disappointed this afternoon when her doctors decided that her rapper name can no longer be G-Button.
Tuesday, June 15, 2010
We raised $3491 (so far; you could make the $10 donation to put us over $3500). Thank you so much to those who donated! Your generosity will go a long way to helping kids like Blaise thrive. There are some more pictures here.
Friday, June 11, 2010
We just got home a little while ago from having dinner with Faith and her mom and Ellie and her parents. Ellie, a smart, funny, active 4-year-old who just happens to be missing lots of intestine, is something of a poster child for Omegaven. Faith comes to Boston from Colorado, originally to get Omegaven and, now that she's off TPN, to check in with the CAIR and Omegaven folks at Children's. I'm pretty sure no one in the restaurant could tell that the three girls were anything other than happy, healthy kids, which is pretty incredible, given some of the things all of their parents had once been told.
All of them, along with some excellent long gut friends, will be joining us in the Walk for Children's Hospital Boston on Sunday. So far, Blaise! has raised over $3200. Excellent! Thank you for your generosity! If you haven't donated yet, now's the time to help some other families beat long, long odds.