Now making requests

Blaise woke up from her nap saying a word over and over. "Wamanan." This is a new word in her repertoire, and it took me a while to figure it out. Once I did, her response made it clear that I had it right. "Watermelon."

For any fellow short gut parents who are wondering: Yes, we will be seeing all that fiber and sugar again soon.

We're back from our trip to Kansas City, which was very fun and involved farm animals, watermelon, a scraped knee, a screaming fit in the middle of O'Hare Airport, lots of books, grandparents, great-grandparents, an aunt, an uncle, other extended family, friends-n-neighbors and an over-excited dog named Buddy. Oh, and we forgot to bring the camera, so until one of the aforementioned relatives sends me some pictures, none of this was recorded for your photo-viewing pleasure.

When it literally rains, it literally pours

Until Saturday, we hadn't seen any rain for a while and it was much hotter than Boston usually is. Ben is pretty bad with heat and Blaise seems to have inherited that, so hot days are not fun in our house. Then, on Saturday, it rained really, really hard: 4-6 inches in the space of 2 hours. It cooled things off for a bit, but....

Blaise's day care flooded. It's basement level and there's a big ramp from street level to the door. All of that rain rolled right down the ramp and into the day care, which now needs fairly extensive repairs and cleaning. The whole center is closed for 2 weeks and 3 other centers also flooded, so there's not any extra space to shuffle all these kids into. We're pretty disappointed because we were just feeling like we were getting into a solid rhythm with day care and we were all loving it. Blaise is always so happy to see her little friends and even hugs some of them goodbye. Fortunately, we're working on a care share with her friend's family (they use the same day care), so she'll still get some time with a buddy and not just with boring Mom and Dad.

Long summer weekend

We hope you and yours had a lovely, safe Independence Day. But we bet it wasn't as cute as ours.

Blaise and I spent Saturday playing with her buddy Ollie while his parents were landscaping their yard. A kiddie-pool-turned-sandbox made for lots of entertainment. Ollie is 8 months younger than Blaise and very sweet. He would have followed Blaise around all day if we weren't so particular about things like naps. Then Sunday morning we went to play with Siri and her family. There are some photos of a visit to Siri's backyard about a year ago that capture just how much change can happen in a year. They are very big girls now, chasing bubbles and splashing in the kiddie pool and eating their watermelon right off the rind. We had barbecue (imported from KC) with Aunt Kate and Uncle Andrew for dinner, thus ensuring that Blaise hit all of the culinary highlights of the 4th of July (bbq, watermelon and blueberries). She wasn't big on the barbecue, examining a burnt end like it was a strange ancient artifact before nibbling a bit and setting it aside in favor of bread and green beans. We didn't have any Gate's sauce, which might have been the problem.

18 months of Blaise!

We've had a quiet couple of weeks. We're in a good routine with daycare. Blaise has been absolutely loving being around other kids during the day. Mom and Dad are boring. She's especially excited about water play and buggy rides, even faking a lost shoe to prolong a buggy ride. (Okay, so maybe I'm giving her too much credit, but her lost shoe did prolong a buggy ride and she wasn't too upset about that.) We also went swimming with her friend Leo last week, which was lots of fun. Otherwise, pretty quiet. Maybe even boring. But I've said it before: As far as we're concerned, boring is good.

Today, however, we had a double-header of appointments. First up was Blaise's 18 month well-baby check-up. 18 months! How did that happen? We love our pediatrician because he has no reservations about declaring Blaise's progress to be amazing. Who doesn't want to hear things like "She's just amazing! I've never even heard of any kid doing so well after all she's been through!" Her growth continues to be good (possibly because she keeps eating entire avocado halves) and she's very healthy. She got a couple of shots with hardly any fussing and then we hit the Au Bon Pain for a croissant.

Then we went home for her 1-year Early Intervention re-evaluation. They didn't tell us anything we didn't already know. Her gross motor is almost completely caught up. Her fine motor is, and always has been, pretty solid. Her social development and receptive language are ridiculously good. Her expressive language is age-appropriate, as is her cognition. The only thing she's still behind on is feeding. We knew that and it makes some sense. She didn't start eating normally (as much as she wants by mouth) until she was 6 months old, solids were start-and-stop while we resolved the colitis issues last fall and we've been rather conservative with what we let her eat (we're getting more relaxed). So she has the feeding skills of a 14 month old, which isn't disastrous and will probably improve rapidly, especially since daycare has been a real boon to her eating. We've seen big improvement with her drinking from a cup even in just the 3 weeks of daycare so far. Hooray for peer models!

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.

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.

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.