Saturday, January 30, 2010

Farewell for now, Flagyl

Blaise had her last dose of Flagyl yesterday morning. It's icky stuff to treat icky stuff and can lead to more ickiness if we're not careful. So we're glad to be done with it. She's been great. No more vomiting (knock on wood), better output, better appetite. It would be nice to stay this way for a while. We're going to start trying "interesting" food again, so we'll see.

Blaise surprised me last night by demonstrating that she knows the names of most of her stuffed animals and dolls. In an effort to distract her while I put her books back on the shelf, I said, "Blaise, where's Madeline?" and she crawled across the floor, grabbed Madeline and proudly showed her to me. Because this is the kind of thing I do, I immediately put a big pile of her animals on the floor, looked away from them and started asking where each one was. She was 87.5% accurate. (Yeah, okay, I know. What can I say? It's who I am.) Her phonetic representations of these words might be a little loose, though. A while later, I asked her where the lion was in a book we were reading and she crawled off my lap to retrieve Madeline.

Sunday, January 24, 2010

Getting back on track

I'm sorry if that last post worried people. Really, Blaise was doing very well. I acknowledge that nightly vomiting sounds pretty scary. It had us a little concerned, too, but most of the time things were fine.

Our friend Flagyl seems to be doing its thing. Blaise's stool is looking more normal, her appetite has improved, she hasn't vomited and her breath is better (bad breath goes hand-in-hand with bacterial overgrowth). She's also been in a great mood the last day or two. So getting back to normal.

In fun developmental stuff, Blaise has begun pointing to things she wants or things she finds interesting. We've been hearing amazingly long babbles, which stop as soon as we get out the camera. Her self-feeding is going well. She eats all of her peas before anything else. I thought she was eating her carrots today, too, but then I realized that she had just been selectively feeding the carrots to me. She has a new-found love for her Madeline doll. I guess she decided that small, tough girls with scars on their bellies have to stick together. Either that or she likes chewing on Madeline's hat.

Yes, yes. More pictures soon. I promise.

Thursday, January 21, 2010

Well, a planned clinic visit would be no fun

We were supposed to go to clinic next Thursday. We went today. No emergencies or anything, just enough small things adding up that they figured they'd bring us in. By us, I mean me and Blaise, as Ben is out of town for work. Fun first: my first time ever driving in Boston. I've driven in Cambridge, but not Boston. You wouldn't think the width of a river would make such a big difference but let me tell you.

Here's what was on the agenda: the leak at her g-tube site, advancing her feeding and the nightly vomiting episodes. What nightly vomiting episodes? Almost every night for about a week and a half right around bedtime, Blaise has vomited significantly. She's fine the rest of the time, although her reflux has seemed worse, her "output" is a little runny and she loses interest in food as the day goes on. No fever, no vomiting other times of the day. It's happened before we lay her down for the night and after, before her omeprozole and after, when she eats a lot during the day and when she eats a more moderate amount. We haven't introduced any new foods. Ooo, another short gut mystery, another short notice clinic visit.

The plan: we're going to replace her button with a bigger size to help with the leaking. The bigger size has to be special ordered, but it should be in next week. We're going to hold off on anything interesting with feeds until we can get this runny stool/vomiting business resolved. And to resolve that, we're going to start with the leading hypothesis: bacterial overgrowth presenting kind of weirdly. Blaise has a history of BO presenting weirdly (specifically, presenting as eosinophilic colitis, a typical allergic response), so we're hitting her with another round of Flagyl and crossing our fingers.

Aside from all that, Blaise is great (except right after she throws up, when she's pretty upset). "Good Night, Gorilla," a gift from our friend Cally during Mystery Hunt, might have replaced "That's not my Monster" as Blaise's favorite book. I was even convinced she was trying to say "gorilla" a couple of times today. We ran into her surgeon while we were waiting for our clinic appointment and he was absolutely delighted with how she looked. He hadn't seen her in nearly 7 months. She's come a very long way since then. Blaise blew a raspberry at him and then tried to take the art off the wall. His response: "That's what I like to see!" I'm not sure I get surgeons but Blaise thought it was funny. I spent the rest of the visit stopping her from taking paintings and things off the walls.

Sunday, January 17, 2010


This weekend, like every Martin Luther King weekend since time immemorial (or at least 1710, according to some sources), was the MIT Mystery Hunt, a weekend long puzzle solving extravaganza. It was Blaise's first on-campus hunt (she was in the NICU last year, but we told her about some puzzles). She spent the day reading "That's not my monster", napping and playing with our friend Mira. She even helped with a puzzle or two. Our team, Metaphysical Plant, won* at 5:50 this morning. We'd like to take any credit for it, but Blaise kind of kept us on our toes. If only more of the answers had been things like "baadatahtahtah" we might have been more helpful. It was, as always, wonderful to see old friends and to introduce Blaise to the (surprisingly large) intersection of the set of puzzlers and the set of blog readers.

In other mysteries, Blaise has been a little "off" the last few days. She's not been eating well and her sleep has been a bit disrupted. We're not sure what is up. She's occasionally congested/runny but has no fever. It might be a lingering cold and it might be the late-arriving side effects of her MMR and varicella vaccines, which can take up to two weeks to manifest. It could be that our schedules have been somewhat disrupted the last few days. And it could also be that she's becoming a toddler.

*I have, in the past, been asked what a team wins when it wins the Mystery Hunt. The answer is honor and glory among a very small subculture and the privilege/penalty of writing the next Mystery Hunt.

Saturday, January 9, 2010

Food adventures continue

Blaise had her one year "well baby" check up on Thursday. Her weight gain is good (16 lbs., 9 oz), but we're still riding that 3rd percentile line, which might make some of her doctors a little grumpy. She more than quadrupled her birthweight (3 lbs, 14 oz) in her first year and quintupled her lowest weight (3 lbs, 4 oz.). Let's give her credit for that.

The pediatrician had a lot of ideas for advancing Blaise's food repertoire (and a tasty recipe involving turnips for our little root veggie fiend). This is good because she's getting a little sassy about purees on a spoon. We are going to move along to playing with our food. More finger food, more eating what Ben and I are eating as long as we know it's okay, more whole peas and chunks of potato all over the floor. As Blaise becomes a toddler, we want to be really careful about fighting over food. It's easy to become obsessed with getting calories into her and she has a tendency to resist when we push too hard. So we're trying to keep it fun. Blaise gets a kick out of feeding us sometimes, which is really sweet, but her aim isn't so great. I've never had someone stick a pea up my nose before.

This morning we hosted a very important baby summit, where Blaise and her friends Auden and Oliver hashed through the major issues of the day. The activity-table discussion was interrupted by the hotly contested issue of who got to play with Ollie's helicopter rattle. Talks will resume shortly, but the international oversight committee declared that naps would be necessary before any real progress could be made.

Thursday, January 7, 2010

Chicken (in more ways than one)

We got the go-ahead at our last clinic visit to try "more complex foods" with Blaise. I figured they didn't mean Roquefort and, given that Blaise had a maybe-maybe-not allergic reaction to hypoallergenic infant formula that left her with bloody stool for five months, we decided not to rush it. We also didn't want to risk a major problem or a hospital admission during the Christmas/birthday extravaganza so we tried mangos and blueberries instead (both were fine).

Yesterday we sucked it up and tried baby food chicken. Blaise didn't particularly like the taste of it. Her therapist suggested mixing with applesauce to make it more palatable. I reminded her that this was Blaise and she amended her suggestion to be mixing it with peas. We might try that soon. But we're back to being cautious after a round of vomiting at bedtime last night, followed by a difficult-to-pass but still runny stool. Chicken is by far the most complex thing we've ever offered her and we knew we were likely to see some issues. We backed off for today and I'm waiting to talk with the short gut NP tomorrow about how to proceed.

In other fun news, Blaise has been having a bit of a leak around her g-button. We're not sure what's going on with it. We treated some granulation tissue around the site and changed out the button completely when it seemed like the balloon that keeps it in place was leaking. But the leak is still there. Some of it might be an older baby's natural curiosity, which has Blaise tugging at and wiggling the button. It might also just be a bad fit. We're hoping for a solution soon. This isn't a major issue at all, but it's kind of annoying to look down and realize that there's a big wet spot on Blaise's shirt again.

For her part, Blaise is babbling like crazy and has begun to respond to verbal cues for a lot of things, including "Soooo big!" (lifting her arms up), "give me a kiss" (with a kiss) and "Who's house? Blaise's house!" (a raise-the-roof gesture, a la Run DMC). She's doing a lot of social referencing with me and Ben about new things and trying to push boundaries with bedtime and naps. Her favorite pasttime is still pulling books off the shelves and paging through them, while ignoring her Christmas and birthday toys. Very strange, as neither Ben nor I are bookish in the least.

Monday, January 4, 2010

Saying goodbye to an old friend...

This is Blaise’s blog, but today I want to write about another member of our family.

Last night, Erin and I had to say goodbye to our cat, Mia. Mia was my cat for 9 years and she was the first pet I ever had. If you’ve known me for very long, you’ve probably heard at least one or two pretty good “Mia stories” because she was a very smart, cunning cat, who also had great comic timing. When I adopted her, I really had no idea how to be a cat owner, which worked out alright since Mia seemed to have little idea how to be a cat: she followed me around MIT’s East Campus like a dog (she’d even “heel”) and was primarily able to out-wit the other cats on Third East by waiting for them to act like cats and promptly acting like a person. We had tons of fun while I was still living in the dorm, and Mia kept me good company during the early years of grad school, the stress of writing my doctoral dissertation, a winter so cold I had her wear a scarf IN the apartment, and all the good and bad times since.

Mia died at home, with Erin and I sitting with her and petting her. She had lost a great deal of weight in the last two weeks, most likely due to kidney disease. The past few days weren’t easy for her or for us, but mostly she just became weaker and weaker until she was ready to go. It’s easy to wish I had done more (and I do) but I also think Mia had a good life with us and had a relatively calm passing.

I won’t tell you that I thought of Mia as being like a kid. I didn’t think that before I actually had a kid and I still don’t think it’s an apt or a necessary analogy. The thing is, like I said, I didn’t know how to be a cat owner when I met Mia and she helped me work out that it doesn’t matter what you know or don’t know going in. You just do your best to have fun together, understand each other, and take good care of one another. I think that’s what Mia and I did, and we had a great time doing it. Though being a parent is much different than being a pet owner, Mia helped me figure out how to just jump into something big with both feet…something that helped a lot as I’ve spent the past year working out how to be Blaise’s dad. For my part, I hope Mia had more good days than bad, and went on her way knowing how much Erin and I loved her.

So here’s to a cat who had a lot of dignity, a lot of brains, and was immense fun to be around. I’ll miss you, Mia.

Sunday, January 3, 2010

New photos

There are 4 (count 'em) new photo albums up on the photo site: November, December, Christmas and Birthday. Enjoy!

Saturday, January 2, 2010

Birthday wrap-up

Blaise's first birthday was great! She got a very cool riding toy.

And blew out one candle (with help from Dad).

On her delicious dairy-free, egg-free, soy-free, frosting-free, fat-free birthday cake. I know, what's left, right? It was actually pretty good. I decided to risk wheat flour, so we didn't go fully allergen-free, but no apparent problems so far. (Huge thanks to Isa at the Post Punk Kitchen for answering my silly vegan baking question.) Blaise enjoyed it, both as a food and to rub in her hair.

Thanks to all of you for your comments, love and support over the last year. We never would have made it this far alone and it was wonderful to know how many people were cheering for our girl. One year down, 90-some to go!

Friday, January 1, 2010

One last list...

With the New Year already upon us:

The Top 10 Blaise Moments of 2009

10. Blaise learns to make the rattle go.
9. The first encounter with peas...Nature's perfect food.
8. Playdates with friends!
7. Learning to play the xylophone.
6. Hunting ducks at swim class.
5. Meeting the co-chairs of the Blaise Fan Club (Paris chapter)
4. Meeting the great-grandparents.
3. Learning to crawl!
2. Coming Home.
1. Meeting Blaise.

Happy New Year, everyone...and happy birthday to Blaise.