Friday, June 18, 2010

Tube-free life

As you might have surmised from the last post, Blaise had her feeding tube removed yesterday at clinic. Her weight was up, even a little higher than her growth curve would predict, and she got really tall out of nowhere, almost 31 inches, bumping her to the *50th* percentile (nutritionist: "Did you stretch her?"). This was after 3 months of no tube feeds, so they decided she was done and out it came. We took Blaise up to her old floor after clinic to see her former nurses and to meet Genevieve. She ran around like the crazy girl she is, to the absolute delight of one of her very first nurses, who I'm sure still thinks of Blaise as a tiny, fragile preemie. Then a quick visit to the vampires and we headed home, tube-free.

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

Button, button

The little plastic thing sticking out of Blaise is her g-button. It's what we hooked her feeding pump up to. She got a g-tube the day she was born and we replaced it with the button when she was 6 months old. She's never known life without it.

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

Walk recap

Blaise! and company had a great time at the Walk for Children's on Sunday. The weather was perfect: overcast and cool, but not rainy. There were something like 5300 walkers, strollers and wheelchairs. It was wonderful to see so many people out and excited about helping such a great hospital. Here's our team post-walk, having just received our finishers medals from the reigning Miss Massachusetts. Siri seems concerned that the walk really wore Auden out.

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.

Speaking of pictures, albums for May and June are also up.

Friday, June 11, 2010

Last walk plug, I promise

We're very happy to report that Blaise's transition into daycare has gone swimmingly so far. She even took a nap today. We're still prepared to have her get upset one of these days, but so far, she's just headed into the room and found something fun to play with. Playground time might be the best part. We were very nervous about daycare not going well, but now we find ourselves with 6 uninterrupted hours in lab several days a week. We can suddenly get so much done!

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.

Monday, June 7, 2010

Day Care!

Today Blaise had her first half-day at Bright Horizons day-care, which is conveniently located about a 5-minute walk away from my office at MIT. We'll spend this week ramping up to our planned schedule, which has her hanging out and playing with the other kids in "Toddler 4" three days a week for 6 hours a day. Today was just a three-hour visit, with Erin hanging out (but mostly hanging back) to see how Blaise does on her own.

How did she do on her own? See below.

She basically doesn't need parents anymore. :) In all seriousness, she had a great morning playing outside, commandeering most of the balls on the playground and carrying them around in a bucket, and having lunch with the other kids. She made a few visits to see Erin, but mostly just kind of waved quickly, gave a high-five and scurried off to go climb something.

The teachers we talked to today said that a lot of kids have a great first and second day, but then get a little upset about things later, so we'll see how she does. We're both just glad she had a lot of fun right off the bat and we figure that she likes people (and playgrounds) enough that it should work out well in the long run. For now, she's got her lunchbox, her cubby-hole and blanket, and looks like she's ready to rock.

Friday, June 4, 2010

$3000 and counting

Team Blaise! has raised over $3000 for the Walk for Children's! Thank you so much to everyone who has contributed! You all are fabulous! The walk is just over a week away, so if you want to help out, now's the time.