Blaise

Thankfulness

2011-11-16T21:04:00.002-05:00

I post a lot of Blaise quips to Facebook, but one of Blaise's biggest fans is Facebook-allergic. We don't want to leave anyone out, especially not someone who has been Team Blaise since day one (somewhat before day one, really), so here's one for her.

Teacher: What are you thankful for?

Blaise: Pancakes. And mom and dad.

Fall fun

2011-10-08T15:22:00.002-04:00

Unbeknownst to this pile of leaves, it is about to be hit with 25 lbs of preschooler (and her father).

So, about those last 5 months....

2011-09-19T21:42:00.007-04:00

We have become bad bloggers. (But we're great at posting Blaise quips on Facebook.)

As usual, no news is good news. Blaise is tracking her growth curve well and has reached a major milestone for kids with medical issues: Only one doctor. I don't even remember how many she had at her peak. We're kind of cheating because her GI here in Fargo also has a general pediatric practice, so he's now both her GI and her general pediatrician. Still, one doc!

We've been all over the place since our last blog entry: two visits from Grandpa Tom, one from Grandpa Barry and Grandma Janet, two trips to the Twin Cities, one to Florida, one to Chicago and one to Boston. Blaise had a particularly good time in Boston where she was able to see lots of her little friends. We have no idea whether she remembered any of them, but they picked up like they saw each other every day. Now all her pretend travel play involves going to Boston, to ride the bus to MIT, to play with her buddies and to go to Henry Bear's Park (an excellent toy store near our old apartment).

Otherwise, Blaise is two and a half, in all its wonderful, maddening, sweet, stubborn, crazy glory. She still loves Indian food and has discovered the wonder that is tortellini. Potty training is done. She's made great friends at day care, especially one little girl who also likes to read books. She loves the supermarket (seriously) and the library. We've also been riding bikes a lot lately, while the weather is nice, and when she asked to join in, who were we to deny her. She thinks she could ride to the library, which is 2.5 miles away, like Ben and I do, but we think she might have to wait a little while on that.

Tumbling toddler!

2011-04-19T15:14:00.005-04:00

Some pictures of Blaise's gymnastic adventures:

March (and some of April, too)

2011-04-10T21:10:00.004-04:00

Yes, we're still here. And Blaise is still two. Very, very two. The snow has almost completely melted, which means that we're able to be outside more. That makes things better for everyone.

The flood that accompanies the melt here in Fargo seems to have crested without causing too much trouble. Ben helped with some sandbagging and I was planning to go, but then they decided they didn't need more volunteers. It's impressive how well people turn out to help protect the city, even if they don't live in a threatened area.

Let's talk about something more fun, shall we? Like, say, toddler gym class. We signed Blaise up for a 4 week gymnastics class at the Y. Her favorite thing is tip-toeing on the balance beam, but she won't have anything to do with the uneven bars. She's also doing surprisingly well with the forward roll. Just before we signed her up, she was evaluated by the North Dakota early intervention folks. She clocked in on target for everything except gross motor, where she was a little behind. After gym the next day, she was doing all the things she had missed on the assessment, so we're declaring her all caught up.

Blaise has been eating well and even helping us do some cooking. She loves to watch us break eggs and she thinks snapping asparagus stems is very fun. We think she might have outgrown the only food sensitivity we thought she had and she has finally found a meat she's willing to eat: Bacon.

Snow piracy and other adventures

2011-03-01T21:02:00.007-05:00

Well, long time, no blog. We've been kept busy with a combination of fun things and not so fun things. Not so fun: the cavalcade of colds (and other bugs) that day care is so good for. But it builds the immune system, right?

More fun: tobogganing, a visit from Gran, making Valentines for friends, tiny new friends and relations, trips to the library, rediscovering Indian food, finally settling into the day care routine and a super-cool, custom-designed new hat. (The pattern, hand-knit for Blaise by our friend James, features a Sierpinski triangle in NDSU colors.)

We've now met all members of Blaise's medical team here. Her general pediatrician is excellent and has had a short gut patient before. He knew all the right questions to ask, so we were very glad about that. We also met her new GI, who was very personable and seemed very on-target with our intuitions. He told us that he wouldn't tell us to stop worrying about her weight, but that we should really stop worrying about her weight. We love hearing things like that. She's still tiny, but she's growing appropriately for her size and isn't missing any developmental milestones. We'll take it.

Spoke too soon?

2011-02-02T08:02:00.002-05:00

Well, Blaise is still a happy girl for day care. But no sooner did I post that we were all settled and happy, than she decided that bed time is no longer her thing. Unfortunately, when she decides to protest bed, she goes the protest puke route. It's really gross and hard to deal with. With regular tantrums, we can just say "I don't talk to people who yell at me. Come find me when you're ready to be nice" and walk away. With protest puke, we have to clean it up, which delays bed time, which was Blaise's goal. We got into this cycle a few months ago, so we have a few tricks up our sleeves, but we're probably in for a week or so of unpleasant bed times.

In other (improbable, but funny) news, Blaise won a drawing through the public library's children's program! The prize is monster truck tickets, which goes to show that even when we're doing impossibly egghead things like signing our kid up for a reading program, we still might end up with monster truck tickets. We had joked when we signed her up that it seemed like a strange prize and when the lady called me at work yesterday to say that Blaise had won, I couldn't stop laughing.

Happy girl

2011-01-31T20:29:00.003-05:00

We dropped a happy Blaise off at day care this morning. She told us all about how she was going to ask Miss Heather for "ponies" (pigtails) and ask Miss Addy to read her "Max's ABCs." We picked up a happy Blaise, too, complete with ponies. Miss Heather reported that she had been happy all day, if not excited about a popsicle. (It was 0 F today, but a child in the room had his tonsils out, so everyone was eating popsicles in solidarity.) Fingers crossed, knock on wood and all that, but it looks like the day care transition might have happened and we're all thrilled.

And one of us is cute.

Day care, work, visitors and cat

2011-01-28T21:45:00.003-05:00

We've been having a very busy few weeks. After an excellent start at her new day care, Blaise hit a few speed bumps in the adjustment process. On her third day there, we arrived for pick-up to find a sign on the door alerting us to gastroenteritis in the center. Well, crap. Blaise seemed fine, until we got a phone call the next afternoon to come pick her up. She had a fever. Her fever was mild and ended quickly without GI symptoms (thank goodness), but was closely followed by cold-like symptoms that took almost a week to go away. When we started her back at day care, she was very unhappy. We had a week and a half of tearful drop-offs, including the occasional retching bout. The odd thing was that she was happy to talk positively about school when we were home: her friends' names, things she liked to do, books she asked her teachers to read, This week started out very badly, but by this morning, all was well at drop-off and they tell us she had a great day. Fingers crossed that we're over this hump. Really, it was too much to expect her to not have some difficulty settling. She'd been an absolute champ about everything else surrounding the move.

Ben and I are getting settled into our new jobs as well. We'd forgotten how big a timesink getting started in a new place can be. ("Um. I'm sure I have an email address. But I don't know what it is. Also, has the key to my office arrived yet?") Between the annoying administrative issues and actually trying to do, you know, research, we've been pretty busy.

Much more fun: We had visitors from Boston! Having survived the ordeal of organizing the MIT Mystery Hunt, "Aunt" Kate and "Uncle" Andrew came to bring us our cat, Leila. Blaise was thrilled to see them, occasionally just grinning hugely at them and saying "Aun'Kate Uncle Andrew in the new house!" She was less excited about the cat, but we taught her to say "Scat, cat!" which, while ineffective, is fun to say. Kate and Andrew arrived just in time for some serious Fargo cold (high of -4 F; you don't want to know what the low was), but we had fun anyway. Blaise was sorry to see them go and would like to fly on an airplane to Boston, please.

Another day, another 'do.

2011-01-11T19:40:00.002-05:00

Perhaps a longer post about day-care soon, but for now: Pig-tails!

2011

2010-12-31T21:34:00.003-05:00

“Auld Lang Syne” means something like “Days Gone By.” It’s certainly an appropriate phrase for a New Year’s song and also apt for Blaise’s birthday.

I think about Blaise being a short-gut kid a lot – I worry about her weight, I fret when she gets sick, I see the scars on her belly every day. Still, two years later, it’s thankfully a very different set of concerns than it was on New Year’s Eve 2008. It’s hard to return to the events of that night (and the following morning) but I also find it hard not to as her birthday approaches.

Moving to a new city makes it a little different: There are places in Boston and Cambridge that have a weight associated with them that no place here does (and that I hope no place here acquires). Still, there are little things…when Blaise was admitted to the hospital in Fargo for IV fluids overnight, carolers came and sang to her in her room and a nurse brought her a donated toy as a present. Even though we were heading home in a few hours, both Erin and I found both of these things remarkably tough to deal with. The nice things people did for us always had a way of getting to us the most. I could usually deal with singing to Blaise during bag changes and other not-fun things, but when some friends came by to give us an envelope full of donations they’d collected for us, I was a total wreck afterwards. Having people at Sanford do these things for us didn’t have quite the same impact, but echoes of things that happened before can take you back.

Letting myself remember B’s first New Year’s Day can be difficult, but today I find that it also makes it easy for me to see and appreciate the accumulation of happy developments over two years. When Blaise was born, I was struck later by just how rapidly our lives changed profoundly – this is always true with a new child, I suppose, but the maelstrom of activity surrounding Blaise’s birth meant that hour-by-hour our lives looked completely different. Today, even following a move to North Dakota, the tempo of our lives is so much steadier. There aren’t numbers that we hang our hopes on every day. The changes we talk about after she’s in bed are things like the books she likes, the phrases she comes up with, and the things that she thinks are funny.

There are other indicators of how far B’s come: Around this time last year, rice mum-mums were the main food of choice because they barely had any ingredients…this year, we know Blaise would rather eat Saag Paneer than pretty much anything else. Walking wasn’t on the horizon for another few months on New Year's Eve 2009…this year, Blaise does a vigorous happy dance in place before she tears off to chase after me, Erin, or her favorite stuffed friends. As for language, Blaise chatters away to us all day about all kinds of interesting and funny stuff she sees going on. These things sometimes make it difficult to believe that Blaise’s life began the way it did, but never so difficult to believe that we forget.

This all means that this New Year’s Eve, I still find myself thinking about days gone by and remembering how tough they were. But, I’m also thinking about days to come and how much fun they’ll be.

I’m going to close by giving you all a version of the same pitch we gave you last year: Blaise’s first birthday present was donated blood. Anybody can save a life. Please give blood if you can.

A happy and safe new year to all of you, and as always, thanks for reading!

Merry Christmas!

2010-12-25T21:39:00.006-05:00

We hope you all had a wonderful Christmas. We didn't do much in our house, but we had lots of fun anyway. Here's Blaise with her favorite Christmas present. It took us 6 hours to convince her to open another one (to be fair, about 90 minutes of that was a nap).

Yes, that is her doll in the salad. We try not to ask too many questions. So we chopped a lot of wooden veggies and then we ate some barbecue. Blaise still isn't interested in meat, but she ate plenty of Jack's Stack beans. (For the uninitiated: Jack's Stack beans are actually the best in the world. Maybe better.)

Blaise still has about 6 unopened presents under the tree. She got so excited about everything she opened that we had to play with it right away. She also seems a bit concerned that opening all the presents will make the Christmas tree go away. She loves the Christmas tree.

We know you crave pictures. So here you go:

Yeah, so she got a little, um, creative with the Mr. Potato Head. We think she got that you are supposed to stick the pieces on, but not that it's supposed to be person-like. Between this and the Dolly Salad, it was kind of a surreal day for Blaise's toys.

We wish you all a happy, healthy Christmas and a relaxing weekend!

Christmas in Fargo

2010-12-22T23:42:00.005-05:00

I said that the next post would be from the Dakota Territory and I meant it! We dodged a pretty nasty snowstorm on the flight in and made it to Fargo on the 11th. We stayed a few days at a hotel and moved into our house with the bare minimum of stuff that our suitcases (and the local Walmart) could supply us with. The moving truck showed up this past Saturday and in the meantime we managed to buy a car (a 2011 Subaru Legacy that needs a name), buy a sofa (a little red number that also needs a name), and unpack most of the non-book boxes.

So, now that the dust has settled, how are we doing? Overall, pretty well - those of you who see us on Facebook already know that we got nailed with a bad stomach bug last week, though. The bad news about that was that we ended up with our first hospital admission in Fargo so that B could get some replacement IV fluids overnight after a very bad day of gut trouble. The good news is that she's been having a great time the last few days and seems to be very close to back to normal (see evidence below).

The other good news is that visiting the hospital gave us a chance to suss out the pediatric floor and our new pediatrician in the context of a fairly mild short-gut moment. I felt so much better hearing that our nurses and our pediatrician have treated short-gut kids before and were very knowledgeable about what Blaise's numbers and history meant. I'd rather stay out of the hospital altogether, but I think these folks can take good care of her.

Besides that extremely not-fun stuff, we've managed to do some fun things, too. We have a Christmas tree that Blaise is VERY excited about, and a pile of presents under it that she is actually less excited about.

The empty house was fun to run around in, but the reunion with all of her stuffed animals and books was a very happy one (I think she may have actually thought that some of those things may have been gone).

Christmas also means that one gets to wear funny hats.

All in all, it's been a good first week or so in Fargo. We got here, our stuff got here, the moving crew on this side was a riot (for any "Newhart" fans, we somehow got both Darryl and Darryl, but not Larry), and the Fargo Public Library has a great children's room. Grandpa Tom paid Blaise a very fun and very helpful visit that has left her with the lingering desire to see pictures of his dog Buddy at all hours of the day. Aside from having been sick, we're all enjoying settling in, though Blaise clearly has been thinking about some of her old friends: we've been hearing a lot about going to visit Aunt Kate and Uncle Andrew and she's spent some time looking at pictures of old friends like Siri, Leo, and her buds from day-care. Still, even if she's missing people a bit, she's also been having a blast seeing all the snow and sticking Christmas decorations all over the house. We've been reading about how "Da Gunch" stole Christmas, spotting "Kissmass Tees!" everywhere and singing Frosty the Snowman over and over and over.

Finally, for those of you who are going to ask: It is indeed wicked cold up here and everyone keeps telling us that it only gets much MUCH worse. Strangely enough, I kinda like it...nothing like the threat of mild frostbite to keep you on your toes (given that you can still feel them). Seriously though, it's just winter up here - nothing too bad, just a little more snow and chill than usual for Boston. I'm sure it's going to get more intense, but for now we're all looking to buy us some sleds.

So Long

2010-12-10T11:32:00.002-05:00

We’re really leaving…the moving truck packed up all our stuff yesterday and it should be on its way to Fargo today – one more day in Cambridge, and then we follow suit on Saturday morning.

I’m writing this from the 6th floor of Building 46, which is the home of MIT’s Department of Brain and Cognitive Sciences. I’m sitting in the Teuber Library, which is one of my favorite places at the Institvte - it’s filled with old, dusty books I probably should read, and PhD theses that their authors probably don’t want me to read. Sitting in front of the big floor-to-ceiling windows in the front half of the library, I realized that it might be true that all the buildings I can see from here weren’t here when I got to MIT (OK, I have to lean a bit to make sure I can’t see Building 40, but let’s not nitpick). Twelve years is a long time and it’s visibly not the same MIT I arrived at when I was 18.

People keep asking me if I’m excited or if I’m sad. The answer’s both and I don’t see how it could be anything else. Leaving here is hard. Blaise and I were reading “Make Way for Ducklings” last night and I realized you can see the tree in the Public Garden where I proposed to Erin in the very first picture of the book. We’ve walked between Harvard and Porter more times than I can even begin to count. We’ve done improv at clubs and bars scattered all over the city. We HEARD the Red Sox win the world series from underground at Park Street. We’ve run all over every inch of campus solving Mystery Hunt puzzles and I’ve run the bridge loops on the Esplanade so many times that I automatically steer towards the good water fountains even when I’m walking.

And of course, there’s Blaise and all the things we’ve loved being able to show her here. We’ll miss the Museum of Science (monkeys!) and the Children’s Museum (bubbles!) immensely. Mr. Bear at Porter Square Books and Mrs. Bear at Henry Bear’s Park got their goodbye hugs a little while ago, and I think one more croissant from Beantowne Coffee will be in order after daycare. Ah, and brunch – the good folks at Johnny D’s will need to see to it that someone else demolishes their pancakes on Saturday mornings and claps and cheers for the guy playing acid-jazz versions of Green Day songs on his guitar.

All this we leave behind, and other things that are both smaller and larger – all the friends who befriended us when we were at our best and took care of us when we were at our worst. The doctors and nurses who saved our daughter. The waiters and managers at our favorite restaurants who noticed B’s feeding pump but didn’t say anything until it was gone and they wanted to tell us how happy they were for her. All her friends at day-care and the teachers who helped Blaise learn to speak her mind and run around like a crazy fool. The colleagues and advisers who gave us room to break on days when we were broken and then let us put things back together in our own time. Wind that’s too strong on the Harvard Bridge. Snow on Mass. Ave. The view from the Red Line going over the Longfellow. The infinite corridor. Smoots.

But y’know what? None of it’s going anywhere. Some of the people will go, some of the places will change, and MIT will build more (and weirder-shaped) buildings after we go. The thing about moving is that we leave behind an amazing place to come back to and we’ll know where to get the best coffee, where to see the coolest stuff, and what friends we’re going to see when we do it. And in the short term, the new adventure begins with labs to build, a new school for Blaise to take over with her charm, and a Christmas tree to put up in Fargo.

So we move on. Madeline and Atka will be belted in beside Blaise tomorrow and we hop our way from Boston to Fargo. It’ll probably be a crazy week or two while we wait for our stuff, but it’s also going to be a lot of fun. For now though, so long Boston – and thanks. We'll leave you with B and I singing a song that she's been pretty into lately - so much so that it's hard not to think she has a better handle on what's happening than you might think. Anyway: enjoy and our next post will probably be from the Dakotas!

Packing up

2010-12-05T13:30:00.004-05:00

We're moving in less than a week. The truck loads on Thursday and we're flying to Fargo on Saturday. After 11+ years in Cambridge, this is a big change, but we're excited for it. Stay tuned for updates on moving out, moving in, getting a car (after more than a decade car-free) and learning to love sub-freezing temperatures.

We took Blaise to a small Chanukah party last night. Fried potatoes *and* applesauce! This is a holiday for Blaise! (Candles, stories and Hebrew prayers were less exciting than the food.) She pronounces "latke" like "Atka," her beloved polar bear, but clearly knows they're different things. She's been talking all morning about "fryin' up Atkas" but she hasn't tried sticking the polar bear in hot oil.

Otherwise, we're engaged in the project of putting everything we own in boxes. It's a lot of work, but I think we're in good shape. Blaise has been coloring the boxes for us, so they will be beautiful, even if they're not especially well-organized.

Food Stylist, Extraordinaire

2010-11-28T14:06:00.003-05:00

Ben and I both have fond memories of helping our moms cut out sugar cookies at Christmas, but our Christmas season is going to be pretty heavily disrupted by moving this year. So before we started packing up the baking supplies, we decided to have Blaise help us make a few. I think we might have a budding (abstract) food stylist on our hands.

For the record, I like iced sugar cookies, so they're all bare right now, waiting for icing. Blaise's Grandma Janet is an all sprinkles sugar cookie baker. Gran does a mix of icing and sprinkles. Blaise just ate one plain. To each her own.

Turnips and carrots

2010-11-27T08:30:00.004-05:00

Happy late Thanksgiving, everyone! I hope you had a lovely day, however you may have spent it. We hung around in our pajamas and tried to get Blaise to watch the parade. Can you tell we don't watch much TV?

She wandered off after about 2 minutes. Commercials are loud and confusing; coloring is fun. We went back for the dog show, which she liked better. Really, who doesn't like the dog show?

Blaise was very interested in the turkey but refused to eat any. She also didn't want stuffing or mashed potatoes. The big hit, as was the case last year, was Aunt Kate's mashed turnips and carrots. This traditional New England dish is sort of the gefilte fish of Thanksgiving: only one person really likes it, but it's part of the tradition, so everyone takes a little to be polite. Well, Blaise loves it. So turnips and carrots and a big slice of bread were her Thanksgiving dinner. She also ate some pumpkin pie and was all about the homemade ice cream. (She kept whispering "Andrew make it. Make ice cream." Learning that he can make ice cream puts Andrew in a whole new light.) The rest of us ate too much of everything.

As for thanks, Blaise's ability to articulate which foods she wants, eat whatever she chooses (even if it's mashed root veggies), digest most of that properly and then run around the house while we try to finish eating pretty much sums up what we're thankful for. A lot of smart, skilled people worked very hard to get her there. We will never be able to thank them enough. We are also incredibly grateful to our amazing friends and wonderful family, who were our support and strength along the way. Thank you.

Good night, friends

2010-11-10T14:55:00.005-05:00

Blaise has been acting out care behaviors with her stuffed animals and dolls for a while, mostly in the feeding domain. The last few days, though, we've seen her start to push that further. She put several of her friends to bed the other night, even patting their backs and singing a little.

The animals are also subject to less fun care. They "bump heads" and get kisses. They also, apparently, share Blaise's dislike of diaper changes. She was putting a diaper on one of her stuffed monkeys last night and after a minute began patting his stomach and saying "Relax, relax." Ben and I both laughed out loud to hear her so closely mimic what we do when she starts resisting diaper changes.

Halloween!

2010-10-29T13:28:00.002-04:00

We're a bit ahead of the 31st, but today is Blaise's first chance to wear her costume (for the Halloween parade at daycare). The video below is just long enough for her to tell you what she is. Enjoy!

Darlin', don't you go and cut your hair...

2010-10-26T21:31:00.003-04:00

A short post for tonight, but a momentous one: The toddler mullet is gone!

Blaise had her first haircut tonight (courtesy of our friend Kristine, who even did an in-home visit) and now she looks incredibly chic. We were all pretty impressed with how chill she was during the proceedings, but a lot of the credit for that has to go to They Might Be Giants for making such a bang-up DVD of music videos to go along with their "Here Comes Science" CD. Blaise would tolerate most things if you let her watch "My Brother the Ape" and "Meet the Elements" on my laptop. Kristine is also great with kids and I think Blaise had a pretty good time being her assistant and holding onto the hair clips and combs.

Of course, Blaise barely said a word while Kristine was there, but immediately after she left started in with: "Kristine. HAIRcut. Thank you, Kristine! Buh-bye. Haircut." We're still trying to communicate that parting words are best shared while the person in question is still in front of you.

Otherwise, mostly the usual fun stuff, but the end of the week brings something VERY exciting: A costume parade at day-care! Fear not, there will be pictures. Blaise is already a big fan of her costume and has taken to wearing it around the house in the evenings, so Halloween may last for a period of some weeks in our house.

Where have we been?

2010-10-20T08:13:00.005-04:00

Hello, Blaise fans! You may have noticed that we went missing for a little while there. Anyone who wants to know why is presumably not the parent of a 21-month-old and not planning a cross-country move. Also, Blaise has been "hiding." (This is her "hiding" spot between her bookshelves and the wall.)

We announced it a while ago, but now the gears are really turning on our move to Fargo. We'll be moving in December, which we hear is the best time all year to move to the Northern Plains. We went out there a few weeks ago to rent a house and get day care arranged; both of those things worked out very well. The thing that did not work out well was the effect of the trip on Blaise. She's at an age where anxiety can run a little high and the strangeness of the whole situation (airplane, hotel, no other kids, riding in a car all the time, stressed out Mama and Dad) really put her in a less than fun state. She stopped going to bed well and became very clingy and nervous. It's gotten better for being back home, but it was a difficult week or two.

The nervousness/clingyness has resolved somewhat, although bedtime is still a little difficult. Blaise has been chattering, singing, swimming, running, asking to use the potty because she wants to wash her hands, peeing near the potty (not in the potty, but it's a step, right?), eating pumpkin custard ice cream at JP Licks, coloring, dancing, running and generally toddlering it up. She's very interested in new foods and still refuses to eat most meat. She's a lot of fun, if increasingly "independent" (parenting book code for "capricious"), and she's running in top gear pretty much all the time. As for Ben and me, we're doing well, too (parenting book code for "exhausted.")

I didn't know where to begin

2010-09-21T17:37:00.002-04:00

We were at the toy store today for a story time that didn't happen (the lady was on vacation). Blaise and I were at the train table with a little boy a few months younger and his mom. The kids were having fun vrooming the trains and watching them go down hills, when Blaise suddenly turned toward the little boy, lifted up her shirt, pointed to her belly and proudly declared, "My sar!"

The look on the other mom's face was pretty priceless. All I could think to say was "It's a long story, but everything's okay now."

Maybe that plan to convey positive messages about Blaise's scars is working a little too well.

Final clinic visit (fingers crossed)

2010-09-19T20:47:00.003-04:00

Blaise modelling her corduroy "ova-aws." She *loves* them.

Barring some actual concern, Thursday marked our final visit to the short gut clinic at CHB. Sort of an odd feeling. I'm not going to say we'll miss clinic, but checking in with people who really know Blaise and really know short gut is always nice. (I think the new fellow didn't quite believe Blaise's medical history. Sometimes, I don't either.) At weight check, we discovered that, although she is longer and has gained a little weight, she's fallen behind the weight curve again. Frustrating, especially now that we don't have the tube to fall back on. That somewhat disheartening news was followed by a visit to say hello/goodbye to our favorite nurses and the world's greatest child life person (We love LaKeisha!) on 10East, which perked us up. Unfortunately, that was followed by a very long blood draw, made all the worse by Blaise's ability to scream for Mama the whole time, and then a drive home that was 3 times the usual duration. So, yeah, not really going to miss clinic, but still strange to think we likely won't go again. What do you say to the GI doc and nutritionist who have been so helpful for so long? "Thank you" seems inadequate.

Blaise is herself: cute, quick, crazy, smart and ornery. Not doing so well with the eating, especially of calorie dense food. She only really digs in for homemade mac-n-cheese and "tikka-sala rice" (she asks for tikka masala for breakfast). Otherwise, it's cheerios and grapes. We think it's just typical toddler disinterest in sitting still for any but the most awesome foods; we're trying to stay patient. Trying is the operative word.

order from chaos

2010-09-12T15:02:00.005-04:00

"With great power comes great responsibility." - Ben Parker

"Blaise, I know you CAN stand on that, but please don't." -Ben Balas

Blaise is a lot better at a lot of things these days. She can run like mad at a goodclip, usually yelling "Ah-Ah-Ah-Ah..." as she storms down the sidewalk. She can climb more things than I really want to consider, and she can use forks, spoons, crayons, and my laptop with increasing ease. At first, this meant that you could spot where Blaise had been by following the swath of wreckage across the house. Stuff could (and did) wind up almost anywhere. Where's the camera? Under the sofa. Where's my left shoe? On the windowsill. Where's the cat? Possibly moved out for good this time.

Lately, however, Blaise has taken a turn towards the more orderly. Witness Exhibit A below:

Blaise's animal friends had mostly been ending up strewn across the floor post-nap...of late, this quasi-orderly stuffed animal tower is a not-uncommon occurrence. I like it, it's structural, but contemporary. The next photos are Blaise's real masterpiece, though:

Why do I like this one so much? Just two towers of blocks...what's the big deal? Well, first, notice that they're the same color pattern. Yellow, red, blue, black. Kinda neat that she decided to copy herself here - sort of a Warhol-esque maneuver. Lest you think this is Blaise moving into a period of non-representational art, however, check out what (I think) may be the inspiration for this showcase:

Neat, eh? I'm not sure this is what she was going for, but it was a little hard not to notice that she built these and then gave Madeline a big hug. There's a lot of developmental reasons that she's probably not quite capable of abstracting away her doll's appearance in Duplo blocks, but I guess you never know. She does love that doll, after all.

Anyway, we're all having a fun autumnal weekend here in Cambridge and probably heading out for some more romping around a playground soon. Hope you're all enjoying yourselves this weekend, and stay tuned for more large-scale construction projects headed up by B.

So much to do!

2010-09-02T21:52:00.006-04:00

We were informed recently that we do not update the blog often enough. We apologize to the Blaise fans who have been missing their regular dose and we'll try to make it up.

Blaise is a busy, busy girl. She has many things to do and she is going pretty much constantly. There are books to read, stuffed animals to be fed, new words to say, songs to sing, jumping to be attempted and so much more. She only stops moving when she falls asleep or when we strap her into her seat for meals. This afternoon, she opened her favorite game on Ben's iPod; we didn't show her how to do that. We can barely keep up. The only recent difficulty has been that she's not very interested in eating at day care, which is a little tough. We don't think it's affecting her weight gain because she comes home and eats everything in sight. Still, we'd rather spread the calories out over the day. We'll figure something out.

Favorite things these days include: Madeline, duplo, They Might Be Giants, puzzles, Indian food (seriously), books, playing with water and walks. You'll notice among these many of the tendencies of an engineer, which suggests that indoctrination is going well. We're working on teaching her the MIT cheer. She thinks it's very funny, but we're not sure if she's laughing at us or with us.

Why the snowman bib? I don't know, but she really wanted to wear it. Questionable fashion choices are also big among engineers.

What we've been up to

2010-08-18T21:01:00.002-04:00

It's been a crazy few weeks, as day care kept postponing its reopen date, sometimes on very short notice. Blaise is also in full swing on her vocabulary expansion, logging as many as 6 new words in a single day (today: "nice", "monkey", "lion", "giraffe", "rock" and "cupcake"). We're trying to maintain a list, but by the time we get to the end of the day, we're so exhausted that we can't remember most of them. Bad language development researcher!

Last week, we made a short trip to Pittsburgh to see Ben's family. Blaise ate tons of watermelon and chased a lot of bubbles. The FisherPrice parking garage, which has a cool ramp for cars to roll down, was a huge hit. She enjoyed seeing family she already knew and also met a few new extended family members, including, best of all her COUSINS! They're big enough to read books and help her do lots of things (young teenage), but much, much more fun than grown-ups. Thank you, Colin and Brendan, for being so great with her.

Also last week, we ended our time with Early Intervention. We had already decided to reduce our visits from weekly to monthly, but in the first month between visits, Blaise knocked out almost all of her 6 month goals. Her therapist, Leslie, basically said "Well, you qualify for services because of her diagnosis, but, really, I have no idea what we should work on." She's in a giant developmental burst: running, eating with utensils, talking up a storm and driving us crazy. Go, Blaise, go! We'll miss Leslie. She's awesome to the millionth degree. She now joins the ranks of people who have done their jobs so well that we no longer need their help. We will never be able to thank her enough.

A busy week

2010-08-07T13:10:00.003-04:00

Photo courtesy of our friend Jarasa, who Blaise had great fun hanging out with yesterday. Now back to our regularly-scheduled weekend nap...

Now making requests

2010-07-28T15:17:00.004-04:00

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

2010-07-13T13:40:00.003-04:00

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

2010-07-05T09:26:00.003-04:00

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!

2010-07-01T13:55:00.003-04:00

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

2010-06-18T13:50:00.002-04:00

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

2010-06-17T20:12:00.005-04:00

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

2010-06-15T08:59:00.003-04:00

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.

Last walk plug, I promise

2010-06-11T20:59:00.002-04:00

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.

Day Care!

2010-06-07T14:54:00.005-04:00

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.

$3000 and counting

2010-06-04T21:00:00.002-04:00

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.

Mellow days

2010-05-31T14:46:00.004-04:00

We took Blaise over to the Common and the Public Garden this morning. She wasn't very interested in the ducks and the frog pond was closed, but she had a great time toddling around in the grass.

She continues to be fun and silly, with occasional bouts of toddler temper. After a stretch of serious eating, long naps and short temper, she's grown about 3 inches in the last week or so. But she's not as pathetically skinny as she used to get after growth spurts, so hopefully we're doing well on the weight gain front, too.

On a blog housekeeping note, we've turned comment moderation on for the blog. We were having a lot of issues with spambots. Please don't let the moderation stop you from posting. We love to hear from you all and your support means the world to us.

Coming Home-iversary

2010-05-28T13:51:00.002-04:00

It's Blaise's first Coming Home-iversary! Happy Coming Home-iversary, Blaise!

We didn't have a party for Blaise's birthday. We had a soy-free, icing-free vegan cake, some pink champagne and a quiet day at home. To be honest, Blaise's birthday was very hard for us. It was the anniversary the most wonderful thing I have ever experienced and the absolute worst thing I have ever experienced. It brought back a lot of feelings and fears that had been suppressed. I know that the tangle of emotions and memories will fade with time and be replaced with happy birthdays and good memories, but this year, a party was just not an option. There was too much to work through.

We had talked about having a party on Blaise's due date instead, a sort of "supposed-to-be" birthday party. But that didn't feel quite right. If we've learned one thing in the last 17 months, it's that "supposed-to-be" doesn't matter; you have to work with the world as it is. The Coming Home-iversary, however, seems like a great thing to celebrate. That's an easy day to remember: excitement and nervousness and frustration (Just bring the damn paperwork and let us out of here!), but mostly joy. The end of 21 endless weeks and the beginning of the new normal. 52 weeks home have made 21 weeks inpatient more than worth it.

PS Happy 4th Birthday, Max!

First concert

2010-05-23T22:43:00.002-04:00

We took Blaise to her first live concert today. They Might Be Giants was playing in Arlington and we've been playing their "Here Comes Science" CD for weeks, so we decided to check it out. We had to wake Blaise up from her nap early to make it in time, which went better than we thought it would. Then, about 90 seconds before the show started, Blaise threw up. (It is not a matter of whether a short gut kid will throw up, but when.) Fortunately, Ben had reminded me this morning to replace the emergency outfit in the diaper bag with one that would actually fit, and with a little help from Aunt Kate, we had Blaise cleaned up and ready to rock before the first song was over.

Blaise had a great time dancing, clapping and waving at the band, although she didn't quite get the concept of the encore and tried to leave. Her reaction to the confetti machine was excellent (brief startle, then calm pointing). We didn't know whether she would recognize the songs, but she definitely perked up for the ones from the CD we have. We'll be signing her up for accordion lessons just as soon as we think she's stable enough on her feet to hold an accordion.

Cross-species negotiations

2010-05-22T16:23:00.002-04:00

Not a whole lot of news...just some footage of Blaise re-opening dialogue with the cat. Watch for the look of befuddled terror on Leila's face near the last two-thirds of the movie.

Sniffles, sass and silliness

2010-05-19T20:44:00.004-04:00

My apologies for the lack of updates. We all came down with a cold last week, which wasn't fun. Blaise is also working on cutting her eighth incisor and a third molar. Coupled with the cold, that made for one miserable baby. But we're all back to normal now.

Colds aside, Blaise is great. Her walking is amazing and gets better every day. She's been eating well. We've started a fish trial and it's going okay so far. She's also getting better at drinking with her straw cup. She must be growing because we've had to go up a size in clothes. My perspective on how kids grow is completely off. I mentioned to Ben that Blaise had completely outgrown her 9 month pajamas. He reminded me that this was perhaps unsurprising, as she's 16 months old. We are one month from our next clinic appointment, which looms as the day they might decide we can lose the tube. We're trying not to get too psyched up about it.

I'm also pretty sure we've crossed the threshold into toddlerhood. Our easy-going baby is increasingly capricious and very easily frustrated. That said, you hear a lot about toddlerhood being difficult, but the flipside is that she's also tons of fun. It's a nothing-by-halves sort of stage.

Madeline

2010-05-10T13:19:00.002-04:00

I love Madeline, from the Bemelmans books. What's not to love? She's tough, brave, petite and has a scar on her belly from emergency surgery. Sound like anyone we know? As it turns out, Blaise also loves Madeline. "Madeline" was her first word, she cuddles with Madeline to fall asleep and she likes to listen to the Madeline books. Actually, she LOVES to listen to the Madeline books. Ben has been away at a conference since Thursday morning and I would estimate that we've read Madeline (the original) at least 10 times a day, with me sneaking Madeline's Rescue in occasionally to break things up. She came close to having a fit when I drew the line at reading it for the fifth time in a row yesterday. I know toddlers are into repetition. I even know many of the theories about why, but this is becoming ridiculous. We went to the library this morning for toddler story time. As the crowd was clearing, Blaise crawled over to the shelves, found Madeline (how did she do that? does she know that library shelves are in alphabetical order by author?) and handed me the book, saying "Mad'ine! Mad'ine!" Ideas for how to stage an intervention with a toddler are welcome.

Aside from this obsession, things are pretty quiet around here. The toddling is progressing well. We're still trying to figure out daycare options. And we're making great fundraising progress for our walk in June. If you can help out, even with just $10, we'd appreciate it. I can't think of a better way to honor Blaise, her progress and the care she received at Children's than to help other kids in similar situations. Thanks to everyone who has already donated!

Passing the hat

2010-04-30T21:12:00.004-04:00

Well, Blaise started toddling and now you'll never hear from us again. We spend the day chasing her and when she finally goes to bed, we spend the evening undoing the damage. She has begun using words for absent objects (e.g., to request some apple or a bottle), which is a giant communicative step. Unfortunately, the dozen or so words she has all sound a lot a like if you're not listening carefully and she doesn't tend to repeat herself, so we keep making bottles when she wants apples and looking at pictures of Dada when she wants a bottle. In new food adventures, she appears to tolerate eggs, even though she doesn't like them much. This let's us move safely outside the vegan realm. Someday we might be brave enough to try chicken again.

Speaking of walking, though, we have organized a team for the Walk for Children's Hospital Boston. This is a huge fundraising walk on June 13 that shuts down the Esplanade for half the day and infuriates joggers. We'll be accompanied by some fantastic friends, including fellow (former) Omegaven baby Faith, Blaise's birth-month buddies Auden and Sirisa and possibly current Omegaven lover Ellie. Now I'm going to ask you for money. Each walker is supposed to raise $150 for Children's. If you can, please take a minute and go to our team webpage to sponsor us. You should choose a walker from our team at random (don't all sponsor just me or Ben) and it will take you to their donation page. In case you need some motivation, this is the hospital that took Blaise from this:

to this:

If you're in Boston or surrounding and would like to join us, you can go here to register. Click the "Join this Team" link on the right side of the page. We're doing the 2-mile walk.

Oh no

2010-04-26T17:31:00.002-04:00

Did you hear that? Yeah...that was the sound of our sanity cackling as it ran off into the night.

The cat has already posted an ad on craigslist. Serious inquiries only.

Spring

2010-04-23T13:49:00.002-04:00

It's very much spring here, which is kind of weird. Boston is not known for its springs. They're usually pretty gray and chilly, but for some reason the past few weeks have been sunny and pleasant. I'm all for it (even though it's probably a sign of undesirable climate change) because Blaise has been impossible to keep inside lately. She literally crawls to the front door and bangs on it.

The nice weather means plenty of time for Blaise's favorite hobbies: walks and swings. She takes a walk (holding onto someone's hand) to the end of our block at least once a day. It's a long block; her therapist was very impressed. Lately, we've been turning onto Mass Ave at the corner and walking a little more. Blaise loves Mass Ave because it is full of people who smile at her and have friendly dogs. On our way down the block, she likes to touch all of the dandelions. There are a lot of dandelions, so it takes us a while. The big new on the walking front is that Blaise took her first real unsupported steps this morning! She took a couple of unsupported steps a few months ago, but those were uncontrolled and accidental. This morning she was steady and deliberate for two steps and then grabbed a chair. She lacks confidence in her ability to walk, but that will come and once it does, we'll be even crazier than we are now.

Related to our craziness, we've begun looking for a proper daycare solution for Blaise. Except for a brief period with a somewhat irregular daytime sitter, Ben and I have been playing baby catch during the day for almost 11 months now. It's exhausting and leaves both of us feeling like we're not really spending any time or energy anywhere. It's also time for Blaise to spend more time with other kids. We're a little apprehensive, as I think any parent is when it comes to relinquishing care of their child to someone else, but we'll find a good situation for all of us.

Apologies for the lack of photos. Our somewhat lackadaisical babyproofing makes it hard to take pictures now that Blaise is very mobile. Also, ever her mother's daughter, she tends to either run off or try to grab the camera whenever we get it out.

Dancing fool

2010-04-15T20:37:00.003-04:00

In all of the craziness surrounding the decision to go to North Dakota, we neglected to mention other fun things that have been going on in our house. My mom (a.k.a., Gran) came for a few days last week. She and Blaise had tons of fun while Ben and I both went to work, which was very exciting for everyone. Blaise is eating like crazy (24-28 oz of formula a day and three or more meals and snacks) and I think she's grown another half inch. Her weight-for-length is on the low side, so pants long enough for her are huge through the waist. That, I guess, is what the nice bulky cloth diapers are for: holding her pants up. Otherwise, we'd have to resort to suspenders.

Blaise's supported walking is progressing nicely. She can walk the full length of our block and back holding onto our hands. More fun than walking, though, is dancing. She does some planned hand gestures to a few songs, including 6 Little Ducks, Itsy Bitsy Spider and Single Ladies. ("Put your hands up!") More fun that that, though, is freestyle boogying.

Some news

2010-04-13T22:43:00.004-04:00

The past week or so has been a lot of fun for Blaise, what with many exciting visitors, trips to the playground and various restaurants, and nicer weather that increases the likelihood of seeing dogs when we're out for a walk. It's also brought some exciting job-related news that we're very excited to share with you, our faithful blog readers.

OK, the sweatshirt is kind of folded, so it's not the best for communicating what's up: Erin and I have just accepted faculty jobs at North Dakota State University! We'll be in Boston for a little while longer, but this means that soon we're moving on to Fargo to build a home (and two labs) where the buffalo roam (OK, technically ND is where the bison roam, but I don't know any songs that involve bison).

So...a big move and a big change for all of us, but also a lot of exciting things on the horizon. We'll probably write more about Fargo and NDSU as we get closer to the actual move, but for now we mostly wanted to share the news with you all.

A year and a day later

2010-04-07T22:03:00.002-04:00

A year ago yesterday, Blaise had abdominal surgery to take down the ostomy she was given immediately after her birth and re-connect her small intestine to her large intestine.

Big day. Biggest day I ever had.

We had no idea what to expect, and no particular reason to hope for much. Oh, we knew a few things, like that she had a lot of large intestine to work with and at least 20cm of small intestine or so, but that was about it. Blaise was a serious black box on April 5^th, 2009 and if nothing else, we knew that we’d find out a lot about the rest of our lives on April 6^th, 2009. Here are Blaise and I that morning, having some quality time before the big event:

What we found out that day was and continues to be wonderful. Blaise’s prognosis changed from dire to excellent in the space of about 8 hours. As those of you who follow the blog know, the year since the surgery has brought a series of milestones that we believed we might never reach. An infant who was potentially unable to eat is now a toddler who eats Cheerios by the handful and eyes chicken parmesan with the look of a predator. Blaise has grown bigger and stronger, learned to crawl, take steps, and dance, and knows the names of at least a dozen or so stuffed animals to say nothing of all the books and other toys she can identify when asked.

It’s a pretty great story, and it’s hard not to replay some of its more dramatic moments now that the seasons have turned back to where they were a year ago. A lot of things are the same: the weather is beginning to get nicer, some of the same friends have visited. Of course, for all those similarities, everything is different now.

A good friend of ours asked me a question a few days ago that I think nobody else has asked: “Do you think you realize what happened?” This is a very good question and doesn’t have an easy answer. I certainly don’t feel like I was in denial about the severity of Blaise’s condition at birth and Erin and I have always made sure we understood the choices we had to make. We read about kids who had numbers that looked like Blaise’s, we talked to as many parents as we could, and I frequently wore the CHB badge that said “Ben Balas, PhD” when I thought it would get us more or different information. We learned all we could about what we were facing and tried to prepare as best we could. The night before her surgery, we talked about what we thought might happen and I had decided that the most likely thing was that Blaise would have an ileo-cecal valve on her large intestine, but that we’d not be able to keep it due to the absence of more small intestine. I forget what Erin’s guess was, but my point is that we weren’t being overly optimistic…we felt like we understood the odds and understood what was at stake and were trying to stay rational about the outcome. Still…with all that preparation, all the studying GI textbooks and reading short-bowel blogs, do I actually realize what happened this time last year?

Sometimes I think I do. I catch myself watching Blaise eat or drink from a cup and think that these were the things that may not have been possible had things gone differently at various points. Something catches in the mind and a combination of relief and fear hits. Relief because we’re where we are, and fear because it could so easily have been different.

It’s the last part of that sentence that makes me believe that ultimately I don’t realize what happened. Not really. Things could have been different, and I have no way of understanding what that would have been like. One of our biggest pet peeves is how many people try and tell us that they know how hard parts of the past 15 months have been. They don’t. They can’t. Likewise, I can’t pretend that I know what it would have been like to care for Blaise under different circumstances. Part of realizing what happened when you dodged a bullet is knowing what it would have been like to be hit. This I lack, and this I am comfortable with.

There’s a word many people use when they talk with us about Blaise, and about her surgery last year in particular. I dislike this word for a variety of reasons. First and foremost, I feel like it obscures more than it reveals. Second, I also think it fails to give credit where credit is due. For all I don’t think I fully grasp what happened last year, I do think I learned some things from it, and it’s these facts that I think matter more than anything else: My daughter is an amazing person, as are the surgeons, doctors, and nurses who have taken care of her.

A year and a day later, thanks again to all of you who spent April 6^th checking the blog for updates 12 months ago. It meant a lot, and we’re still so glad we had good news.

Peer models

2010-04-06T14:08:00.003-04:00

I think there's a lot to be said for social pressure of various kinds. Peer pressure is often talked about in a negative way, but it can be very positive. You just need excellent peers and it's a great thing.

We're very lucky to have some fantastic peers for Blaise. We had three friends have babies within a couple weeks of Blaise being born, several friends have had babies since and we've made new friends with kids close to Blaise's age over the last year. I've been noticing lately that she seems to pick things up from them much more quickly than she does from us: going to the playground with Auden made her more motivated to try supported walking, some time with her friend Leo introduced a new sign to her vocabulary and a wonderful week of fun with our French visitors has Blaise much more willing to take a little food from a spoon again and a bit more outgoing with her walking. Who cares that Mom and Dad can walk, sign, talk and eat? When another toddler does it, it's much more relevant.

We saw Mathieu, Julie and little Erin off last night. The time always flies when we're with them and we'll have to work out a way to spend more time on the same continent soon. Blaise and Erin were fast friends: bisous, "sharing" toys and gleefully pointing at dogs. Photos are here.

(Not the best picture of the two otherwise photogenic girls, but they did like their hats.)

Up

2010-04-02T13:09:00.002-04:00

Blaise's weight, that is. From 17 lbs, 11 oz at her clinic visit 3 weeks ago to 18 lbs, 5 oz at the pediatrician this morning. Her ped's scale always comes in a little heavier than the one at clinic, but that's still well over half a pound in 3 weeks. Two of those weeks were tube-free. Grow, Blaise, grow!

Cute pictures of Blaise with her friend Erin are forthcoming.

Milk

2010-03-28T14:57:00.004-04:00

Blaise has gone a week without her feeding pump. We haven't weighed her, but we have her 15 month well-baby check-up on Friday, so we'll see how she's doing then. We've begun the whole milk trials. So far so good. The nutritionist told us that, theoretically, Blaise has adequate intestine to tolerate regular milk. Then she paused, grinned a little and said, "Theoretically." We know what she meant. Short gut kids are total enigmas because none of them are enough alike to provide good, generalizable data. We're scientists; we get that. It's still a pain to not be able to make real predictions. But, so far, whole milk seems okay.

Blaise has also rediscovered avocados and graham crackers and cheerios have surpassed peas as favorite foods. She has become much more daring in her standing/walking attempts. Still no long-term unsupported standing or walking, but she can go an awfully long way holding onto fingers. She also dances while sitting (holds her hands in front of her and twists at the waist; this is both super-cute and a *perfect* occupational therapy exercise). We got her a CD of New Orleans music and she figured out how to make her CD player play "Choo choo ch boogie" over and over. Really, less tech savvy in the toddler might be a good thing.

The French Team (a.k.a., Mathieu, Julie and Little Erin) are arriving tomorrow afternoon. Blaise has only seen Little Erin on Skype but I have a feeling that they'll be fast friends. Can one city handle two such adorable girls? Only one way to find out.

What we're not doing

2010-03-22T20:55:00.002-04:00

I'm not hooking Blaise up to her feeding pump tonight. In fact, she hasn't been hooked up since Friday. When the home medical supply company called this afternoon about next month's order, I didn't place one. We only get pump bags and formula from them, but we don't need more pump bags and we're using a different formula now. It's a big change and it feels a little strange. Don't get me wrong; it's great! But I keep feeling like I'm forgetting something and there's always the nagging worry that she won't eat enough and won't grow. Yes, I worry about that even when she's shoving 6 cheerios in her mouth at a time. It's hard to shake 15 months of worry about food and growth.

Last week, we were telling someone the story of Blaise's first few months and we realized that it's been nearly a year since her second surgery and more than a year since the prescient fortune cookie. The progression since has been slow and steady and positive pretty much all the way. The tube is the last outward sign of all the craziness, giant scars notwithstanding. Now we have to learn to be parents of a more-or-less healthy kid. I'm reminded of the day we had to teach Ben to change a diaper on a baby *without* an ostomy. It's pretty easy by comparison.

We hear your demands

2010-03-21T22:55:00.002-04:00

There are new pictures up at the photo site. So you can stop with the harassing phone calls.

Early spring

2010-03-20T14:00:00.002-04:00

We live walking distance from at least 6 playgrounds. It's almost 70 degrees and sunny today. Those two facts make for one very happy Blaise (who has finally decided that bending her knees to step is worthwhile).

We hear our friends and family in Kansas City are getting snow again today. So, yes, we are gloating.

Breakthrough

2010-03-14T20:03:00.002-04:00

Blaise got this hippo push toy for Christmas that eats special blocks as you run it over them. She does not care about this feature, but prefers to put the blocks very carefully on top of other things. That's okay. She just realized that the activity table is a perfectly fine push toy, too.

Clinic or "Oh, my goodness, Blaise!"

2010-03-11T20:22:00.002-05:00

We hit clinic today. It was a scheduled visit, which was nice. Blaise took a very long nap, so we were late, which was not great. Late for the doctor means going to the end of the line. We vroomed Blaise's toy car up and down the exam table many times. She was very patient. We saw our favorite NPs, our favorite GI doc and our favorite social worker. Then we went to see the vampires in outpatient blood draw (bad scene; Blaise cried so hard she made herself throw up). Finally, we went upstairs to see our 10East nurses. Between the swine flu panic and Blaise being generally healthy, we hadn't seen them in months. Almost all of our old regular nurses were on duty, which was fun. Lots of fussing over how big she is and how grown up she seems.

Her weight is up to 17 lbs. 10 oz (8.0 kg) and she is 28 1/2 inches long. So still a beanpole, but a bigger beanpole and sticking to her growth curve, which is all we ask. We made the decision to switch her formula from Elecare to Pediasure. Pediasure has higher caloric density (30 kcal/oz), but is more widely available and isn't elemental. Blaise is going to have to start dealing with those complex proteins on her own. It's also milk-derived, so closer to real food. We've been cleared to begin introducing regular cow's milk as well.

And then there's the really big change. Remember the g-tube? "Learn to love the g-tube?" "Enteral feeds encourage intestinal adaptation, so we'll be using the g-tube for a long time." "The g-tube is no big deal." We may be saying goodbye. We're going to try discontinuing her overnight tube feeds. This is the last step in getting rid of the tube. If she goes 3 months without tube feeds and is gaining weight appropriately, they'll remove her button.

I'll believe it when I see it. And even then I might not believe it.

Flying solo

2010-03-08T21:31:00.004-05:00

It's a quiet night on Creighton St. Mission accomplished (for now).

Erin's away giving a talk in the frozen north, which leaves me and the B on our own for 3 sleeps. Our friend Jenny taught us to count the days until something happens in those terms, and having a baby makes that particular unit of measure very concrete.

I have to admit, I was a bit nervous about this. Erin's had to do several stretches like this while I've traveled this year and I had to make some trips while Blaise was still inpatient, too. This is the first time Erin's been anywhere without us along in...well, a while. We worked out that the last time Erin flew alone was a trip she took to England just under two years ago, and then we realized that Blaise was actually a stow-away on that trip. Sneaky, this one...very sneaky.

Anyway, back to the nerves...definitely there at first, but having hung out together for two days, we're doing just fine. The weather in Boston is beautiful all of a sudden, so we've been strolling around town in our ultra-light umbrella stroller, hitting all the nicest toy stores and coffee shops, and we met our friend Margaret this morning for breakfast (eggs and bacon for me, "The Margaret" for Margaret (she made it up and Zoe's Diner respects her choices), and dry wheat toast for Blaise). In between all the walks, we've been having a lot of fun tearing up her room and putting it back together. Blaise has some ability to put Duplo blocks together now, and we also learned yesterday that her shoes squeak when you stomp in them. This is actually the best idea EVER for the parents of a child who are trying to coax their kid to do more stepping. Blaise thinks the squeaking is hilarious, and once she worked out that she could do it herself, bouncing and stomping became her new hobby.

Other things we've learned:

1) The iPod "SimpleDraw" app is a great way to keep your 14-month old chilled out for a bit.

2) What's better than a playground ball? A BIG playground ball.

3) What's better than a BIG playground ball? Almost nothing.

4) Cheese is good, but Dad's cheese is much better.

5) Dad's laptop has a pretty cool "Photobooth" application that is robust to baby attacks (see below)

Tomorrow, Mom returns, but first Blaise and Dad head out for one last night on the town! I wish I could say we were done with travel for a while, but I suspect we're not quite done yet. At the very least, I'm headed to Baltimore in a few days to give a talk at ICIS (International Conference on Infant Studies) about some of my other-race research with 9-month olds. Besides that, we have to wait and see...me and/or Erin may have to make some more side trips to exotic locales to talk about our work. For now, the baby sleeps, the cat has stopped caterwauling, and it's time for a book.

Say Cheese!

2010-03-05T14:44:00.002-05:00

Blaise's Aunt Libby did a science fair project in junior high about which kinds of cheese mold fastest. She called it "Say Cheese!" (My junior high science fair projects were about causes and effects of ground water contamination; we're different people, me and Libby.) This has nothing to do with Blaise, but I always think of that project when I see the phrase "Say cheese."

Anyway.... We abandoned the project of convincing Blaise to eat yogurt. She's not interested in being spoon-fed and we're not interested in cleaning yogurt off the walls, so we're calling a truce. Next on the dairy list: cheese. Cheese is nice and low in lactose, the sharper the better. Blaise wasn't sure at first, but she ate some. Today is day 4 of the cheese trial and so far so good on the gut front. She'd better continue to tolerate it because I just watched her completely scarf half an ounce or so of Vermont cheddar.

Just the usual crazy

2010-03-01T21:57:00.005-05:00

Yes, okay, so it's been a while. Everything is fine on our end, but the reality is that an increasingly active toddler, plus two parents with demanding jobs, no child care to speak of and impending major career decisions leaves very little time for blogging.

Blaise is 14 months old today and she celebrated by heading with Ben to the State House to protest inadequate funding (and consequent proposed changes in eligibility and cost) for Early Intervention services. Turnout for this "stroller-in" was very good and, hopefully, will make an impression on the Governor and the Department of Public Health. Her first political rally. Awww.

Other fun stuff included a visit from Grandpa Tom over the weekend, complete with a trip to the aquarium and an afternoon at the local pub watching the USA/Canada hockey game. Blaise really liked the fish. She also weathered some rowdy hockey cheering very well. Grandpa sneaking her some French fries probably helped with the hockey fans. We've started to introduce dairy foods. Yogurt is first on the list (very low lactose, which short gut kids tend to have problems with), but Blaise doesn't like to be fed with a spoon. I tried smearing the yogurt on her toast this evening and she just wiped it all off. So it's hard to say whether her gut likes yogurt but Blaise certainly doesn't seem to.

Developmentally, Blaise is becoming much more fluid through her knees, which is huge. Preemies tend to be somewhat hypertonic through their legs, which makes learning to stand and walk very tricky. We've been working really hard on getting her to bend and bear weight through her knees and it seems like she's finally having a breakthrough. She says a couple more words: "Doug" (one of her stuffed animals), "duck" and possibly "baby," although only Grandpa Tom has heard that one. I'm not sure there's a noun that's relevant to her interests that she doesn't understand. Also, putting diaper covers on Mama's head? Hilarious.

Entertainment

2010-02-17T21:57:00.007-05:00

Anyone looking for a way to keep a toddler entertained indefinitely on a snowy day?

Not really sure why people buy baby toys. A box of cloth diapers and a couple of board books and Blaise is set for hours. (And so am I, if I foolishly decide to try to contain the chaos.)

Milestones, expected and otherwise

2010-02-13T19:23:00.003-05:00

Cheerio?

Here is the very brief post I was going to make today: "Everything is going very well. Blaise seems able to tolerate wheat, which opens up the door for pasta, toast and lots of other goodies. We are also delighted to report that Blaise has a new friend, Josie. She was born Wednesday evening to our friends Chris and Aurora. Blaise is interested in, but slightly intimidated by, Josie's big brother Max, who is almost 3, so maybe the two girls can team up once Josie is able to lift her head." That seemed like enough exciting news for one blog post.

But now I also get to report that Blaise knocked down two milestones today. First, we're finally giving her credit for a stable, reliable first word: Madeline. It comes out "Madai," but it's very consistent. She still says both "mama" and "dada" but not exclusively for me and Ben. Her therapist thinks it's very funny how strict our criteria are for giving Blaise credit for words. Apparently other parents would have claimed "mama" and "dada" a long time ago. Madeline, though, is clear and definitely refers to her doll and only her doll.

Now for the unexpected milestone: Blaise took her first unsupported steps today. This was unexpected because she doesn't stand independently for more than a second or two and she hasn't taken more than a few dozen supported steps. She's not walking by any means. She had pulled to stand at one of the boxes in her room, Ben asked about the toy she was playing with, she turned around, took her hands off the box and took two lurching steps toward him before falling on him. They were, as he reports it, uncontrolled and treacherous, but steps. Steps! Yikes!

Everything's fine

2010-02-08T21:22:00.003-05:00

I hear that people get worried when we don't post. Things are fine. It they weren't, we'd have more to post about. The short version of our lives right now: busy but uneventful on the Blaise front. This blog is in danger of becoming a normal baby blog/brag sheet, although I feel like I'm tempting fate by saying so.

Blaise is doing well. We did a full soy challenge this week and it looks like soy is on the okay list. You might not think you eat a lot of soy, but you'd be amazed. Tofu is not a new favorite, but Blaise will eat it and her gut seems to have no problems with it. If it turns out that she has a million other allergies, she'll at least be able to live a relatively healthy vegan existence. Her favorite finger foods these days are peas (duh), chopped up green beans and cheerios. Almost all of her solid food intake is finger food and it's lots of fun. She's also doing better with bottles, so it seems like the Flagyl took care of whatever the issue was with her appetite.

Now for the shameless bragging portion of our blog post: Blaise reliably points on request to dogs, cats, elephants, shoes, books, babies, Mama, Dad, Leila (our cat), Aunt Kate (who she also identifies as Uncle Andrew; they do tend to come as a unit) and probably lots of other things we haven't tried yet. She startled a golden retriever puppy by barking at it the other day and she meows at our real cat and at her stuffed cat. She says "mama" when she's upset with Dad and "dada" when she's upset with Mom. She can take both hands off whatever she pulls up on and stand on her own for a moment, but she has the Wile E. Coyote problem of falling as soon as she realizes she's unsupported.

Farewell for now, Flagyl

2010-01-30T13:57:00.003-05:00

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.

Getting back on track

2010-01-24T23:10:00.002-05:00

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.

Well, a planned clinic visit would be no fun

2010-01-21T20:08:00.002-05:00

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.

Mysteries

2010-01-17T10:09:00.002-05:00

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.

Food adventures continue

2010-01-09T21:54:00.007-05:00

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.

Chicken (in more ways than one)

2010-01-07T21:34:00.003-05:00

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.

Saying goodbye to an old friend...

2010-01-04T17:45:00.002-05:00

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.

New photos

2010-01-03T15:04:00.001-05:00

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

Birthday wrap-up

2010-01-02T11:59:00.005-05:00

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!

One last list...

2010-01-01T00:04:00.002-05:00

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.

Ten more...

2009-12-31T21:52:00.002-05:00

The New Year is rapidly approaching. Here's another list:

Top 10 Short Gut Moments
10. Squirting 3 cc of breastmilk into a bottle nipple placed in Blaise's mouth; hoping it's not too much for her to handle
9. Blaise eats solid food
8. We use the word "jejunum" in a sentence for the first time
7. Erin pulls out the button
6. Ben pulls out the button (more momentous because it was the first accidental button removal)
5. Ben meets the other cognitive scientists who have a kid with short gut
4. Blaise becomes Omegaven baby #111
3. Our nurse admits that she also wants to cry because the ostomy bag fell off again
2. Blaise comes off TPN
1. "Did you say 45 cm from the Ligament of Treitz?"

Another top ten

2009-12-31T19:53:00.002-05:00

What changed for us in 2009? Almost everything. But where did we really feel some of the most lasting impact? Our vocabulary.

The Top 10 surprisingly high-frequency words of 2009

10. Puder (as in Dr. Mark Puder of CHB)

9. stool

8. "output," for when we wanted to discreetly talk about #9

7. parenteral (as in "nutrition")

6. duoderm

5. Omegaven

4. bilirubin

3. ostomy

2. bowel/gut

1. jejunum - which wins by virtue of also being an amazing Scrabble word.

More Top 10!

2009-12-31T18:39:00.004-05:00

Blaise's blog now presents: The Top 10 books of 2009 (according to Blaise)

10. That's Not My Monster

9. Is Your Mama a Llama?

8. Hug

7. The Cat in the Hat

6. A Bear Called Paddington

5. That's Not My Monster

4. Come Here, Cleo!

3. Bear's Busy Family

2. Talk With Me

1. That's Not My Monster (seriously, Blaise HIGHLY recommends this one).

Top 10...

2009-12-30T22:02:00.003-05:00

In the fine tradition of making unnecessary lists of everything as one year ends and another begins, Erin & I have decided to take a good look back at 2009 by making some Top 10 lists of our own. We'll be posting more of these throughout the day tomorrow (mostly to keep ourselves awake until midnight), but to kick things off:

The Top 10 Children's Hospital Boston Cafeteria Tips

10. The chicken piccata is surprisingly good.

9. The Hummus & Crackers Snak-Pak? Complete rip-off.

8. "Theme Day" is never as good an idea as you think it might be.

7. Do NOT mess with the woman who runs the grill. She'll flip you...flip you for real.

6. If the cashier says you get the employee discount, you get the employee discount.

5. The pizza oven will be working tomorrow.

4. Just because that woman is slicing tons of english muffins doesn't mean you can have one.

3. If you don't want to watch "Hannah Montana," don't sit near the TV.

2. The Taco Salad wrap is awesome.

1. They are NOT out of regular coffee. The nice guy with the dreads has got your back.

First birthday

2009-12-27T20:11:00.003-05:00

It's hard to believe that Blaise's first birthday is Friday. To be honest, we have a lot of baggage surrounding her birthday. We heard the word "if" used in conjunction with "her first birthday" a time or two and that makes an impression. The day she was born was also extremely difficult for us in a lot of ways and much of the emotional weight of any traumatic or difficult circumstance tends to bubble up on anniversaries. So we're just planning to lay low and hang out with our big girl on her birthday. We'll have cake and a party later, but for that day, we're looking forward to a quiet family time.

We would, however, like to presume to ask you for a birthday gift. The very first birthday present Blaise ever received was from an anonymous stranger and it is no exaggeration to say that it saved her life. Someone took the time out of their day to give blood, not knowing who would get it or what good it would do. We are forever grateful to that person. Please, if you are physically able to, donate blood this week or next. It costs you nothing but half an hour and a little needle stick but to someone else, it will be more valuable than anything else. Thank you.

And now back to our regularly scheduled program of cute baby photos.

Christmas Day

2009-12-26T12:31:00.006-05:00

Christmas Day in the Conwell/Balas household was definitely lots of fun. We woke up (as per usual) to Blaise's morning serenade, which of late often contains a word that sounds an awful lot like "Dad." Another new feature of the morning wake-up call is that Blaise has decided there's no reason to lie around waiting for Mom & Dad to come in the room when you could STAND around waiting for the same. That's right...naps and night-time sleep both tend to wrap up with a standing baby these days, which means it's probably time to lower the crib mattress so we don't get any impromptu acrobatics. Blaise has exactly the wrong combination of fearlessness and physical skill, so we don't put anything past her.

Anyway, after the usual morning routine, it was time to evaluate the gift situation. We began with a detailed inspection of her stocking:

Said stocking contained several cool-looking books and some friendly stuffed reindeer that can either be put on the tree, cuddled with, or chewed on. Blaise explored all three options, but not in that order.

The stocking properly inspected, we commenced to unwrap like crazy. Actually, I should say that we commenced to unwrap methodically. Blaise is apparently a big fan of laying siege to the wrapping paper, attempting to identify major fault lines and deliver the maximum damage per tearing motion. Very tactical.

The presents that sat under the tree were many and varied: Blaise is now the proud owner of an abacus, a "Farm Friends" bowling set (which I am incidentally very excited about myself), a very cool convertible push/ride-on toy from her friends Chris & Aurora, and a lot of new books from our favorite press, Barefoot Books. There were also plenty of other fun gifts from family and friends, but listing them all would take a while. In fact, opening them all at one go turned out to be a bit overwhelming, so we did Christmas Day in stages. Reading some of the new books "Bear at Work" and "Bear about Town" turned out to be a good way to relax between unwrapping sessions.

After the morning festivities, our friends Kate and Andrew came by for a Christmas brunch, which involved some serious waffle-making (and I do mean serious), and lots of other good stuff. For her part, Blaise munched on some rice cookies and fruit and had a pretty good time just hanging out and watching the scene.

We wrapped up the day with a night-time stroll in her brand-new stroller (courtesy of Grandma and Grandpa Balas), down a very quiet Mass. Ave. and into Harvard Square.

We got home just in time to put a sleepy baby to bed and put all of her torn up wrapping paper in a cardboard box for her to open on her birthday.

Christmas 2008 was a pretty rough holiday for us. Even a year later, I have to admit that I found myself getting tense and nervous as Christmas 2009 approached. Hard to shake the bad stuff, I suppose...it's still a little hard not to associate the trappings of the holiday with being very, very scared. That said, want to know the best way to get past having a really rough holiday? Have a great one.

Christmas Eve

2009-12-24T19:02:00.004-05:00

...after a short (but fun) photo shoot, Blaise now snoozes away waiting for a morning of much unwrapping and pulling things out of stockings. Merry Christmas to all, and to all a good night!

Holiday fun

2009-12-22T22:34:00.004-05:00

Blaise just experienced her first at-home snowstorm. It was fairly minor by New England standards (maybe 9 inches), but enough to keep us in. The snow's arrival was heralded by the appearance of a bearded man on our porch, bearing packages labeled "Open in case of snow." (No, not Santa, unless he lost a lot of weight and started using Just for Men. Our friend Andrew.) They contained mittens and wool socks perfect for playing in the snow. Unfortunately, her snowsuit arrived from Kansas City a little too late for this snow. She didn't much like the cold when we took her out, though, so maybe it's okay to wait for next time.

Other firsts: First teeth (finally!) popped through. One on the top and one on the bottom. First "sharing" of food. Actually jabbing Ben in the eye with a rice cookie. First try drinking from a sippy cup. Less than successful.

We were a bit nervous about changing Blaise's formula right before the holidays. Ben and I spent last Christmas Eve at Children's (in the Fetal Care Center) and, as wonderfully kind as everyone was, we'd rather not do that again. She had a couple of runny diapers but got back on track quickly. Her labs all came back great after clinic. Perhaps the one we're most excited about is her citrulline, which is taken as a measure of the mucosal surface area of the gut (and therefore correlates with absorption). When last checked, it was 5 (units unknown). They like to see 12. On Thursday, Blaise came in at 19. Although her GI assured us that he was more likely to believe that there was something wrong with the citrulline test than that Blaise lacked adequate absorptive surface.

As for Christmas, the tree is up, the stockings are hung. Present wrapping and cookie baking are in full swing. Blaise doesn't get any of it, but she sure likes to tear wrapping paper.

Clinic run-down

2009-12-17T19:21:00.003-05:00

Today we took Blaise in to CHB for her first clinic visit in something like 6 or 7 weeks. It's been an eventful couple of weeks, what with all the failure to gain weight, the sudden jump in weight gain, and the acquisition of multiple motor skills. The latter now includes pulling herself up to standing from kneeling (as of this morning) and from sitting (this evening).

So what's the word from the Short Bowel team 7 weeks later? Generally speaking, very good.

The little B is still trundling along on her own 3rd-10th percentile growth curve for weight, and making up some ground for height and head circumference. It turns out that we're done with the calcium supplement, and may also be done with the iron supplement depending on how her blood work turns out. Chances are it'll be in the normal range, which (if you're keeping score at home) would bring us down to just two medications. Pretty cool, that.

The rest of the plan is pretty straightforward: Make the baby even bigger! We were given the go-ahead to try out more complex foods (meats, soy, wheat, etc.) and we're going to be mixing up higher density formula for her so she won't need to drink as much to get lots of calories. Assuming this goes well, we may be talking about discontinuing the use of the tube in the very near future. We got the sense that they considered it today, but decided to see how she'll do with the updated diet. Totally fine by us to wait, but also exciting to think we're in range of getting free of the g-tube. We don't hate the thing, but I won't say we'd be sad to see it go.

So that's it...the team seemed really happy to see her, and she spent a good bit of her time trying to get the examination light off the wall. There were really only two low notes of the whole thing for Blaise:

1) Having blood drawn for lab work. I think she's big enough to know what's coming once they start messing with her arms down at the outpatient blood draw center, and she knows it's not fun.

2) The awesome bear suit we put her in for trips out in the cold.

She hates it, but we're bigger. :)

Happens to me all the time...

2009-12-15T19:46:00.004-05:00

Ever have one of those days where you're working on a paper and you think of a reference but you can't remember which book it was in but you don't have enough info to google for it so you pull every book you have off your shelf in a desperate attempt to find it only to get distracted by some other article and the next thing you know you've spent two hours reading unrelated stuff?

Blaise had one of those days.

This is her new favorite pasttime.

Moving right along

2009-12-14T22:25:00.004-05:00

I'm not really sure when it started, but Blaise has begun to lose some of her baby tendencies and act a bit more like a toddler. She's crawling like crazy, getting into anything she can reach, throwing the occasional tantrum and playtime is a whole different thing.

She's still being a little finicky about eating sometimes. One day this weekend, she only let Ben feed her. Another, I had to sing "Mairzy Doats" over and over to get her to eat. And then there are days, like today, where she gulps every bottle and chows down on her solids with no problems at all. We had another weight check today while we were at the pediatrician's office for the second H1N1 vaccine dose. Her weight gain has been much better in the last 2 weeks; she's at 16 lbs even.

When not tearing all over her room on all fours, Blaise has begun forays into the world of finger food. We'd tried whole peas and chunks of carrot, steamed to be very soft, but those were a little slimy and hard to pick up. Most of the baby biscuits and dry snacks are a bit more complex than we're ready to try with Blaise, or contain something we're avoiding for the moment (e.g., milk, eggs, wheat, soy). Enter rice rusks, or Baby Mum-Mums. These are slightly sweet rice crackers that are supposedly a common first food in Japan. It took a few demos from me and Ben, but Blaise caught on pretty fast. Now she's self-feeding like the big girl she is. The box says these crackers don't make a mess. That is a lie. It's fun anyway.

Unexpected developmental milestones

2009-12-09T21:46:00.002-05:00

Tonight, Erin, Blaise & I braved the first real "wintry mix" of the season to go to our parent group at The Guidance Center in Somerville. This is where Early Intervention (Blaise's physical therapy services) is headquartered and these evenings are a nice chance to go talk with other parents who have kids with medical needs while the little ones hang out and do fun stuff with VERY qualified baby-sitters. There's only a few other families that attend, so we've been getting to know people over the past few months and it's been fun seeing how all the babies have been progressing. When all the typical kids you know are racing around like mad and gaining weight effortlessly, it helps a lot to spend time with families who are on different timelines and have a different set of goals.

Having your kid spend some time playing with other kids and other adults also gives them a chance to roam outside their usual playing behaviors a bit. The EI staff are great at trying out new things with Blaise, which is how we found out last week that she absolutely loves bouncing up and down on a yoga ball. They've also got a great big container filled with rattles that Blaise never gets tired of sorting through. Taking things out of bins and then discarding them is a new hobby of hers, so this is great fun. Besides all the toys that are appropriate for typical kids, they have a lot of adaptive toys for kids with cerebral palsy, low muscle tone, or other motor problems...which brings me to the "unexpected milestone" hinted at in the title of this post.

One of the kids that comes to this group was born just over a year ago with quadriplegic cerebral palsy. His mobility is very limited, and so he uses a lot of specialized adaptive equipment for all his daily activities, including playtime. His mom and grandma brought along one of his "switch" toys tonight, which is basically a cool-looking blue button mounted on a plastic box that you can program to play whatever you record onto it. Toys like these can be really great for kids with CP, especially if they have communicative problems...being able to push a big, chunky, button to make something happen can go a very long way if you aren't able to speak or use sign language. Now when the kids are hanging out with the EI staff, they're all just kind of playing on a big activity mat and can check out all kinds of stuff. Blaise doesn't have any toys that are like her friend's "switch," and the fact that it sang songs when you pushed the button (sung by it's owner's family) probably made it even more attractive. So what did she do with it when she got the chance to play with it?

She totally hacked it.

OK, maybe I'm giving her a little too much credit...but still. Before, when you pushed the button, it would cycle through "Wheels on the Bus," "Twinkle, Twinkle, Little Star," and a few other songs. Now, it gets through the first two and then you hear something like:

"Blaise? Honey, what are you doing with that?"

"I think maybe she didn't push the right button."

"Um, what does that little light mean?"

Blaise somehow managed to push a combination of buttons in the right order so as to overwrite one of the songs and replace it with general playtime chatter. Apparently she also got one of the batteries out of it before they realized that that was what she was actually doing. Happily, it's not hard to re-record the old song, but we did apologize for our daughter's technological investigations. :)

The nurses on 10 East used to tease us all the time about Blaise's MIT mobile. One of them took to calling them the "No-Pressure Bears," even after we made it clear that we'd be happy with any place Blaise might choose to go to college (except CalTech). More than one person who found out that Erin and I both went there would look at Blaise and say something like, "Two MIT parents? Both developmental psychologists? You're doomed, kiddo."

The truth? Blaise isn't doomed. Blaise already knows how to re-program small electronic toys. It's the rest of us that need to watch out. Hide your appliances, folks.

Travelling baby

2009-12-07T21:51:00.002-05:00

We are back in Cambridge after a long weekend in Kansas City to visit my family. Flying with an 11 month old is a completely different experience from flying with a 9 month old. Blaise has more opinions now than she used to and she's never been hesitant about making her opinions known. The high points of the trip were meeting her great-grandparents and a subset of my extended family (my actual extended family is so big that I'm not sure I've met them all), playing with her grandparents, Aunt Libby and Uncle Jim, having a mini-Christmas (she loved the wrapping paper!) and crawling forward. That's right, in her tradition of saving big milestones for my parents, Blaise crawled forward for the first time on Friday. I'm assuming that the demos from Aunt Libby helped. She's still clumsy and slow at it, but she's picking up speed and skill every day.

Getting Blaise to eat enough is continues to be a challenge. She just seems to lose interest, especially in her bottles. Trying to eat in interesting places like airports doesn't help. We'll be seeing our friends at clinic again soon and Blaise's OT/PT has some suggestions for making eating more interesting. We're working on broadening the spectrum of okay foods and playing with combinations. Hopefully a little time back in the normal routine will help, too.

Two steps forward....

2009-12-01T20:44:00.002-05:00

one step back. The Brogan family calls it the Short Gut Cha-cha. We'd been sailing forward for so long that it was tempting to think that we were avoiding it. Blaise had another weight check today at the pediatrician and she's only up 2 ounces in 3 weeks. No one is pleased. We had gone down to half her previous time on the overnight feeds, but we just haven't been able to get her to eat enough by mouth during the day to make up for it. So we'll be talking with the CAIR team and deciding whether to go back up on the tube, increase the caloric density of her food or start working with a feeding therapist to encourage Blaise to respond appropriately to her own hunger signals. This isn't uncommon in tube-fed/TPN kids, according to our pediatrician who has a couple such kids in his practice, and can usually be resolved.

It's not helped by Blaise's otherwise healthy preference for nutrient-dense low-calorie foods (like veggies) over higher calorie foods (like fruit and grains). In a non-short-gut person, that's a really good thing. I'm sure my doctor would love to hear that I prefer green leafies to potatoes. Blaise, though, needs those calorie-dense foods. With dairy and eggs still off the table, it would be very nice if she would show more enthusiasm for avocado. Top that off with her increased physical activity and we have quite the perfect storm for low weight gain. We'll get past it, but it will mean closer monitoring and more work for all of us.

And now a brief political moment: I waxed enthusiastic last night about Blaise's therapist. Blaise gets her therapy through the state's Early Intervention program. Our special-needs parents' group is also through EI. I found out this morning that Governor Patrick vetoed a line item in the new state budget that would reinstate substantial funding to EI programs. These programs aren't free; there's an income-based sliding scale of fees. However, without state support, those fees will increase substantially and some services will likely be cut. With low SES as a major risk factor for prematurity and developmental delay, it's important that these services remain affordable for all families. If you live in Massachusetts and care about Early Intervention, please take a moment to email the Governor's office and ask them to reinstate this funding. Politics over. Here's a cute baby.

Her own therapy

2009-11-30T20:54:00.004-05:00

Blaise has an occupational therapist (who also acts as her physical therapist). Her name is Leslie and she's fantastic. She's been great at encouraging Blaise to work on her gross motor skills while having lots of patience with Blaise's stubbornness and a sense of humor about her tendency to circumvent therapist tricks like putting toys out of reach. Her assessment of Blaise's current motor development: "She's doing her own therapy."

To be clear, she's still behind on gross motor and we're not saying goodbye to Leslie any time soon. The thing that's changed is that Blaise is initiating a lot of the exercises that Leslie was previously coercing her to do. A couple of weeks ago, she would roll to her back automatically; now her "base" for play is her belly. She spontaneously pushes up onto her hands and knees to rock back and forth. She tries to pull herself up on the rail of her crib and to use me and Ben as climbing equipment. This is a huge change. We can tell that it's exhausting and difficult (to use Ben's words: "I can see her cerebellum overheating"), but she's doing it anyway. And once Blaise decides she's going to do something, there's no stopping her. Help us all.

Thanksgiving!

2009-11-26T21:21:00.003-05:00

Lessons learned this Thanksgiving Day at the Balas/Conwell household:

1) Our daughter REALLY likes mashed carrots and turnips. Erin and I still consider ourselves faux New-Englanders, but I think this means Blaise is officially native.

2) Leila the cat will tolerate having her face grabbed by a curious baby for a surprisingly long time.

3) Babies really like looking at other babies, even over Skype. We learned this from watching Blaise talk with her friend Erin in Paris...we are convinced they were conspiring to paint the town red once they end up on the same continent. A side note: Blaise has now seen England and France thanks to the series of tubes that is the internet.

4) Pureed squash and apple is fine and all, but hot coffee, red wine, chocolate pie, and other things that are dangerous to people and their nice clothes are much more exciting.

Happy Thanksgiving everyone!

AWOL

2009-11-23T14:17:00.003-05:00

Our apologies for vanishing from the blogging world for a bit there. To say that things have been crazy in our house would be a bit of an understatement.

Blaise is great. She's down to 8 hours a night on the pump and we think we're good to go down to 6/night this Thursday. She is not a fan of green beans, but continues to be obsessed with peas. Some parents mix applesauce into veggies to get babies to eat them. We mix peas into applesauce to get Blaise to eat the applesauce. Her babbling has exploded and she seems to have learned to modulate her volume (mostly toward the loud end). She has also begun crawling! She only goes backward at the moment, but we get the occasional forward scoot. Her therapist says that most kids crawl backward before they go forward. We have a feeling that forward is only a day or two away. I was surprised how fast she is able to move backward, too.

Of course, this learning to crawl business coincides with moving back into our apartment after the deleading. The workers made quite a mess, so we had to keep Blaise pretty isolated in her own room until we got the rest of the house clean. Thankfully, we have wonderful friends who like to play with her. If you know a family with a baby and they're moving or having work done on their house, the most useful thing you can do is offer to entertain the baby. Seriously.

Talk, talk. Where are the pictures? Here you go.

Big steps

2009-11-13T19:44:00.004-05:00

Blaise has been a busy girl lately. (Ben and I have been busy, too, but we don't kid ourselves that you come here to read about that.) Here are some highlights:

Earlier this week was Blaise's first Monday Night Football Steelers game. It started well after bedtime, so she got some Terrible Towel waving in early.

We have discovered Blaise's favorite food. We were nervous about giving her peas because they were the first non-sweet non-Elecare-flavored food we were going to try. The response: a HUGE grin and eager grabbing for more. Seriously, Blaise would eat nothing but peas if we let her. We gave her some whole steamed peas last night and she had a great time playing with them, too, but none of them made it to her mouth.

We also returned to apples for the first time since the blood stopped. Things got a little, um, runny, so we've put them on hold for a couple of days and then we'll try again. The runniness could also have been fallout from her double flu vaccines on Tuesday. We did a quick weight check while we were in for the shots and are proud to report that she has cracked the 15 lb mark (15 lbs 1 oz; up 10 oz in less than 2 weeks!). We've bumped down to 8 hours/night on her tube feeds.

On the developmental front, Blaise has discovered the joy of taking items out of containers and occasionally of putting them back in. She's also begun raising her arms to be picked up, imitating sounds that we produce (just clicks) and giving wonderful, sweet proto-kisses. She'll deliberately turn to me or Ben, open her mouth and press it against our cheek. That might be the best thing ever.

Temporarily displaced

2009-11-09T10:54:00.002-05:00

I'm not sure we've had quite so crazy a week since Blaise came home, but I am pleased to report that we are now settling into our temporary apartment in Arlington while our Cambridge apartment is deleaded. So far, no panicked emails or phone calls from our landlady, so we're hoping it stays that way. As though packing up everything and moving with a ten-month-old weren't enough of a project, our babysitter got sick and cancelled one day this week and I was occupied with a conference all weekend. We made it, though, and we have to send a huge public thank you to our friends who helped out, both by taking Blaise for a day and by helping us pack up and move. There are good friends and then there are the kind of friends who don't run screaming when they meet what lives in under your bed and in the back of your fridge. We are incredibly fortunate to have the latter.

Blaise made an appearance at the conference on Friday afternoon, much to the delight of blog readers who are also child language researchers. (There are a lot of you. I had no idea, but we really appreciate your support!) She didn't give a presentation this year, but I'm thinking to submit her name for the keynote next year. Her working title is "Maanabamaana: !nananama." Yes, that is an alveolar click; it's her new favorite sound. Although by this time next year, she should have some actual words.

More pictures, soon, I promise. Once I find the camera.

Gavin

2009-11-06T07:30:00.003-05:00

I posted a little while ago about a family whose little boy is struggling with mitochondrial disease and who were having a house fully equipped for him. Gavin has been declining severely for the last week or so and his parents made the difficult decision late last night to give him peace. His ventilator will be turned off tonight, after his extended family has had a chance to say goodbye.

Please keep Gavin, his parents and especially his older sister in your hearts.

Sorry to disappoint

2009-11-02T09:31:00.002-05:00

I'm afraid that no one won the guess-Blaise's-weight game. The rules were closest without going over and everyone went over. No one went with the classic Price is Right strategy of guessing 1 dollar. We're glad you think she's such a rockstar, though! Blaise weighed in at 14 lbs. 7 oz. (6.57 kg) on Thursday. She might be bigger since then; she's eating really well.

Our weekend was spent dressing a bewildered Blaise in her pirate outfit, eating delicious food with friends (Merry Thanksaween!) and packing up our house. It turns out that Cambridge requires all apartments rented to families with children under 6 to be certified lead-free. Let's just say that our 100+ year old apartment was very much not lead-free. Blaise's lead levels are totally fine. It not like she's chewing on the windowsills, but the law is the law. So we're moving out on Sunday for a couple of weeks while our house is deleaded. It's a big pain, but the upside is that we'll come home to fresh paint, new windows and a professional cleaning job. Our temporary apartment is just around the corner from some good friends and only down the (really big) hill from some others, so we'll at least be in good company.

YARRRRR!

2009-10-31T14:13:00.002-04:00

Happy Halloween from Cap'n Blaise!

Pop quiz

2009-10-29T20:37:00.001-04:00

Last time we went to clinic, Blaise weighed in at 13 lbs. 10 oz. (6.18 kg). That was three weeks ago. How much did she weigh today?

Rules: Price-is-Right style. Whoever comes closest without going over wins. Answers may be in either pounds and ounces (US) or kilograms. Answers in other units will be accepted, but not converted. Grandparents who have already been told are excluded from competition.
Prize: Honor and glory among the readers of this blog.

For a full clinic recap, see below.

Clinic and back

2009-10-29T20:04:00.002-04:00

Blaise's stool is completely blood free, even at a microscopic level. She is now off Flagyl and off sulfasalazine. We're down from 14 doses of various meds and supplements daily to 5. We had a good conversation with the fellow about why what we thought was an allergic colitis would respond to antibiotics. We only care so deeply because, well, it worked, but we still like to know and understand these things. We're good to keep introducing new foods with the 5 day rule in place. We've also begun the process of weaning the overnight tube feeds. Tonight Blaise will be on the tube for 10 hours instead of 12 and in a couple of weeks, we'll go down to 8.

We saw several friends who were also in for clinic today. One of our old roomies just turned one a week or so ago and is doing great. Another, unfortunately, was getting readmitted. Such is the short gut life. We also met a new friend: a mom whose 4 month old son also has short gut due to a volvulus. She had seen our blog and said "Oh, this is Blaise?!" when we were introduced. I hope that seeing our big girl is encouraging to parents just starting down the short gut path. We drew (and continue to draw) a lot of support from reading blogs about other kids and it's nice be able to pay that forward.

Finally, tonight marks a big milestone for Blaise. As of tonight, she has spent as many nights in her own crib at home as she has in the hospital. We were told a long time ago that Blaise might spend most of her life inpatient. It's a good feeling to break even.

The more things change

2009-10-25T17:24:00.002-04:00

While poking around the internet for information on how much and when "normal" babies eat (because the doctors are still telling us to feed Blaise "like a normal baby" and we have no idea how such babies eat), I found this baby feeding pamphlet from 1938, published by the Libby's company. When we started Blaise with rice cereal, my grandmother emailed to say that she remembered rice cereal being her kids' first solid food, too. I suspect, however, that the pediatrician isn't going to recommend some of these recipes anymore. Like the one involving raw egg. Of course, then I read a similar pamphlet that is currently distributed by the Beechnut company and wondered how much of it Blaise's kids will laugh at.

We had swim class again today and Blaise's enthusiasm was so great that she kind of scared some of the other kids with her splashing. The instructor said "Well, she's got the kicking and splashing thing down." Unfortunately, she has no interest in the other aspects of swim class: blowing bubbles in the water, floating or holding the side of the pool. She just wants to chase the rubber ducks around the pool. I'm not saying I blame her. Ben took some videos, which we'll try to get posted soon.

We've ruled sweet potatoes okay on the allergy front. On to pears! (Yeah, that alphabetical thing has gone completely out the window.)

Uh-oh

2009-10-24T20:37:00.003-04:00

Blaise hit another milestone. It's a dangerous one. She isn't crawling yet, but she did work out how to get from sitting to lying down. Once she's lying down, she rolls. So no more sitting her on the floor for a few minutes and stepping out of the room. We have independent mobility. I didn't actually see this happen. I just left her sitting and came back to her stuck halfway under the changing table.

The Flagyl stopped two days ago and so far so good. Sweet potatoes are still a hit, although more as an artistic medium than as a food. As long as some of them end up in her, that counts, right? See the photo site for new pictures. It's fun to think about Blaise being able to experience a lot of different foods. The idea of an Elecare-themed Thanksgiving was depressing.

Blaise has been eating like crazy and pooping a lot less. (Blood in the bowel triggers movement.) I have my fingers crossed for her weigh-in at clinic on Thursday. She's finally started to outgrow the three-to-six month sizes and nine month clothes aren't ridiculously big on her anymore. So she at least seems bigger.

Age is just a number

2009-10-22T08:08:00.003-04:00

Blaise turned 8 months "corrected" on Tuesday (eight months from her due date). It's still strange sometimes to have a baby whose development is spread out over a big span of time. In some ways, she's definitely about 8 months. In other ways, she's more like her birth age. In still other ways, she's ahead of both and in a few more ways, she's behind. I gave up completely on the baby books a long time ago. Blaise is Blaise and we have to trust her therapist, her doctors and our own instincts to tell us whether she's on the right track for her.

The big developmental change lately has been increasing focus on goals. If she gets in her head that she wants to roll onto her belly and look at a label on her changing table, she'll do it, even when she's partway through a diaper change. Of course, we can't get her to stay on her belly any other time. Her tube is an endless source of fascination and she actively searches for it when we hide it from her. We try reasoning with her. It doesn't work, so she just drives us crazy. Another of those things that's good in the big picture (who doesn't want a goal-oriented kid?) and trying in the moment. She's also developing an interest in other babies. She gets very excited about the photos of friends' babies on our fridge and had a good time playing with the other kids last night at our parent group.

Otherwise, things are good. Today is Blaise's last day on Flagyl and we're going to check in about the plan to discontinue the sulfasalazine. You all take me way too seriously, as I've heard a number of speculations about what "D" food we would try next. "A" was apples and avocados. "B" was banana. "C" was carrots. "D" was sweet potatoes. They're a hit.