First birthday

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

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

...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

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

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...

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

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.