Friday, December 31, 2010

2011

“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!

Saturday, December 25, 2010

Merry Christmas!

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!

Wednesday, December 22, 2010

Christmas in Fargo

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.

Friday, December 10, 2010

So Long

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!

Sunday, December 5, 2010

Packing up

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.

Sunday, November 28, 2010

Food Stylist, Extraordinaire

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.

Saturday, November 27, 2010

Turnips and carrots

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.

Wednesday, November 10, 2010

Good night, friends

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.

Friday, October 29, 2010

Halloween!

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!

Tuesday, October 26, 2010

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

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.


Wednesday, October 20, 2010

Where have we been?

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.")

Tuesday, September 21, 2010

I didn't know where to begin

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.

Sunday, September 19, 2010

Final clinic visit (fingers crossed)

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.

Sunday, September 12, 2010

order from chaos


"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.

Thursday, September 2, 2010

So much to do!

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.

Wednesday, August 18, 2010

What we've been up to

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.

Saturday, August 7, 2010

A busy week



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

Wednesday, July 28, 2010

Now making requests

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

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

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

Tuesday, July 13, 2010

When it literally rains, it literally pours

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

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

Monday, July 5, 2010

Long summer weekend


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

Thursday, July 1, 2010

18 months of Blaise!

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

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

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

Friday, June 18, 2010

Tube-free life

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

In case you're wondering, here's how a g-tube removal works: They just take it out, slap a dressing on it and tell you no food or drink for 4 hours. Then you change the dressing and monitor for leaks. The g-tube site is like a piercing in that it closes up on its own when you don't have anything in it. Because the tissue it goes through is very blood-rich, it closes fast. For some people, it doesn't quite close right on its own and they do a small surgery to stitch it shut. Blaise's appears to be closing appropriately on its own.

So that's it. It's gone. No holes in my kid other than the ones she was born with. My mom asked me last night how I felt about this and the truth is, I'm not sure I really feel anything except maybe a sort of quiet pride. I didn't really mind the g-tube. It was the first thing I learned to take care of after Blaise was born and the first aspect of the whole thing that I made my peace with. It wasn't a troublesome or dangerous thing, like the central line was. It was a mild annoyance with of couple of actual perks (like "venting"). So I'm not wildly overjoyed like I was when the central line came out. I'm glad the tube is gone, but I think I was taking it for granted that it was going to go someday, if not yesterday, then in 3 more months, or 3 more years or whenever the time was right, and in the meanwhile, it was no big deal. The most salient emotion for me is pride, but I've been so proud of Blaise her whole life that yesterday didn't feel all that different. My girl is a champion and a rockstar. She always has been.

Thursday, June 17, 2010

Button, button

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


So she seemed a little confused and disappointed this afternoon when her doctors decided that her rapper name can no longer be G-Button.

Tuesday, June 15, 2010

Walk recap

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

We raised $3491 (so far; you could make the $10 donation to put us over $3500). Thank you so much to those who donated! Your generosity will go a long way to helping kids like Blaise thrive. There are some more pictures here.

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

Friday, June 11, 2010

Last walk plug, I promise

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

We just got home a little while ago from having dinner with Faith and her mom and Ellie and her parents. Ellie, a smart, funny, active 4-year-old who just happens to be missing lots of intestine, is something of a poster child for Omegaven. Faith comes to Boston from Colorado, originally to get Omegaven and, now that she's off TPN, to check in with the CAIR and Omegaven folks at Children's. I'm pretty sure no one in the restaurant could tell that the three girls were anything other than happy, healthy kids, which is pretty incredible, given some of the things all of their parents had once been told.

All of them, along with some excellent long gut friends, will be joining us in the Walk for Children's Hospital Boston on Sunday. So far, Blaise! has raised over $3200. Excellent! Thank you for your generosity! If you haven't donated yet, now's the time to help some other families beat long, long odds.

Monday, June 7, 2010

Day Care!


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

How did she do on her own? See below.

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

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

Friday, June 4, 2010

$3000 and counting

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

Monday, May 31, 2010

Mellow days

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.

Friday, May 28, 2010

Coming Home-iversary

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!

Sunday, May 23, 2010

First concert

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.

Saturday, May 22, 2010

Cross-species negotiations




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.

Wednesday, May 19, 2010

Sniffles, sass and silliness

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.

Monday, May 10, 2010

Madeline

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!

Friday, April 30, 2010

Passing the hat

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.

Monday, April 26, 2010

Oh no


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.

Friday, April 23, 2010

Spring

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.

Thursday, April 15, 2010

Dancing fool

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.

Tuesday, April 13, 2010

Some news


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.

Wednesday, April 7, 2010

A year and a day later


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 5th, 2009 and if nothing else, we knew that we’d find out a lot about the rest of our lives on April 6th, 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 6th checking the blog for updates 12 months ago. It meant a lot, and we’re still so glad we had good news.

Tuesday, April 6, 2010

Peer models

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.)

Friday, April 2, 2010

Up

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.

Sunday, March 28, 2010

Milk


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.

Monday, March 22, 2010

What we're not doing

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.

Sunday, March 21, 2010

We hear your demands


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

Saturday, March 20, 2010

Early spring

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.

Sunday, March 14, 2010

Breakthrough

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.

Thursday, March 11, 2010

Clinic or "Oh, my goodness, Blaise!"

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.

Monday, March 8, 2010

Flying solo


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.

Friday, March 5, 2010

Say Cheese!

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.

Monday, March 1, 2010

Just the usual crazy

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.

Wednesday, February 17, 2010

Entertainment

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.)

Saturday, February 13, 2010

Milestones, expected and otherwise

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!

Monday, February 8, 2010

Everything's fine

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.

Saturday, January 30, 2010

Farewell for now, Flagyl

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

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

Sunday, January 24, 2010

Getting back on track

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

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

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

Yes, yes. More pictures soon. I promise.

Thursday, January 21, 2010

Well, a planned clinic visit would be no fun

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

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

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

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

Sunday, January 17, 2010

Mysteries

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.