Thursday, December 31, 2009

Ten more...

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

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!

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).

Wednesday, December 30, 2009

Top 10...

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.

Sunday, December 27, 2009

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.

Saturday, December 26, 2009

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.

Thursday, December 24, 2009

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!

Tuesday, December 22, 2009

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.

Thursday, December 17, 2009

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. :)

Tuesday, December 15, 2009

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.

Monday, December 14, 2009

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.

Wednesday, December 9, 2009

Unexpected developmental milestones

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.

Monday, December 7, 2009

Travelling baby

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.

Tuesday, December 1, 2009

Two steps forward....

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.

Monday, November 30, 2009

Her own therapy

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.

Thursday, November 26, 2009

Thanksgiving!

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!

Monday, November 23, 2009

AWOL

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.

Friday, November 13, 2009

Big steps

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.

Monday, November 9, 2009

Temporarily displaced

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.

Friday, November 6, 2009

Gavin

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.

Monday, November 2, 2009

Sorry to disappoint

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.

Saturday, October 31, 2009

YARRRRR!


Happy Halloween from Cap'n Blaise!

Thursday, October 29, 2009

Pop quiz

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

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.

Sunday, October 25, 2009

The more things change

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.)

Saturday, October 24, 2009

Uh-oh

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.

Thursday, October 22, 2009

Age is just a number

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.

Sunday, October 18, 2009

Orange

When Blaise was first out of the hospital, we went to visit some friends. While we were there, Blaise spit up a bit. At the time, she was on AquADEKs vitamins, which we have since stopped because they were causing her colitis to flare up. We were also pretty sure she wasn't absorbing them properly because they turned everything, especially her spit-up, bright atomic pumpkin orange. These friends are very unflappable people and, faced with bright orange baby puke, just calmly asked "Why is it orange?" We explained. No big deal.

Yesterday I had Blaise in lab with me and she spit up a bit. This time, when my colleague asked, "Why is it orange?" I was able to give a much less exotic answer. "She just ate some carrots."

I like that answer better.

Wednesday, October 14, 2009

C is for...


I know what you're thinking. "Ho, hum. Another photo of Blaise smiling in her high chair."

Look closer at the food smeared on her chin. Notice anything?



That's right! It's orange!

Here is the conversation I had with her GI yesterday:

Me: We haven't seen blood since late Friday night.
GI: She started the Flagyl on Friday?
Me: Yep.
GI: Well, huh! I wish we had started that ages ago!
Me: One hypothesis at a time.
GI: Right. I guess the real test will be what happens when we take her off it.
Me: So can we restart solids?
GI: Sure!

So C is for carrot. We were a little worried that so long off real food would make Blaise adverse to new tastes. She thinks carrots are very interesting. Fingers crossed for no more blood....

Tuesday, October 13, 2009

A great way to help a fantastic family

This isn't something I've ever done, but I'd like to ask for some help for another family that could use a little bit. Gavin is a handsome three-year-old boy who has mitochondrial disease. Mito basically causes cell death and can lead to the loss of entire organ systems. In February, Gavin had his entire intestine, as well as his gallbladder, removed to reduce the number of infections he was having and improve his quality of life. That's right, removing those organs improved his quality of life. He is wheelchair bound and TPN/Omegaven dependent. He's been going through a very rough stretch, with frequent transfusions and line infections. Beyond all of this, his family lives in a second floor apartment, so his mom or dad has to carry his chair and all of his pumps/tubes/drainage bags down a flight of steps if they're going to leave the house.

The wonderful thing about this family is that they do leave the house. They go to the YMCA and the park in between their many visits to the hospital. They are really doing their best to live a full life in spite of all of the medical crap, but the older and more complicated Gavin gets, the harder it's becoming for them. They're working with an amazing group to take a house and rehab/renovate it to make it fully accessible for Gavin. This group, called Erin's Dream (different Erin), uses as much volunteer labor and donated material as possible, but they also need a good bit of financial support. I know things are tight for a lot of people these days and that there are a lot of kids and families who need help, but if you find yourself with a little extra, this is a really simple way to help one family. Here's the link for donations. If you want to read more about mito, click here. For Gavin's blog, go here.

Thanks for putting up with my heartstring-tugging.

Sunday, October 11, 2009

Blaise Balas: Aqua-naut!

In her last post, Erin alluded to a new adventure Blaise would be undertaking today. Having returned from said adventure, I'm happy to say it was a great success: Blaise LOVES swimming!


Her parent-infant class meets once a week at the MIT Athletic Center. Class lasts about 25 minutes and is a very low-key introduction to the water for little ones betweek 6-18 months. The pool at the Z Center is great and as you can see Blaise had a great time splashing around with her mom. We went into the whole thing figuring there was a not-small chance she might just freak out and not have a great time being in the water...you never know, right? Either way, we figured it was definitely worth the new experience.

The end result was just a ton of fun all around. Blaise was cool as a cucumber while she was getting into the water and only hesitated a little bit the first time her face got splashed. Any wariness she may have been harboring gave way rapidly to the realization that she could splash around in the water like a wild child. She spent the whole class waving her arms and legs around like mad and giggling away at Erin blowing bubbles at her under the water.

What about the tube? Not really much of an issue as it turns out. It's sealed tight at her belly, so not much of anything can get in, and all we did was put her in a t-shirt so the other parents didn't freak out at the sight of large abdominal scars and a plastic appliance. She also now has some adorable clownfish swim diapers that unfortunately had to get covered up with a vinyl diaper that the Z center sells. Chalk this up as another really fun, normal thing we can do with her...we're just hoping she keeps enjoying it so much. I swim like a brick (I'll even go so far as to say like a dead brick) so I'm particularly excited to have Blaise be comfortable in the water.

So that's what we're going to be doing with our Sundays for a while to come. Hopefully we can get some Blaise & Dad time in the pool soon, or at the very least Dad can hit the track while Blaise hangs out in the water with Mom.

Saturday, October 10, 2009

Well, baby

Blaise went to see her pediatrician for a well-baby checkup yesterday. We love our pediatrician. He's smart, friendly, good with kids and always makes us feel good about how Blaise is doing without just telling us what we want to hear. After a discouraging clinic visit, it was good to talk to someone who thinks our little rock star is a little rock star. He was even able to explain a bit more concretely why the antibiotic might help the bleeding even if we haven't identified an infection. The doctor commented more than once about how strong Blaise is and he was considerate enough to not draw blood, even though that's standard for the 9-month check-up. Blaise had blood drawn 3 weeks ago; she'll probably have another draw soon. He thinks it's fine to wait until they're drawing for another count anyway instead of sticking her twice. (Did I mention that we love this guy?) A quick flu shot later and we were out the door and home for a nap.

Blaise has been hilarious the last day or two: mugging for the camera and giggling hysterically over nonsense words (e.g., peef and dax). We're embarking on a new adventure tomorrow. Hopefully, she'll have fun with it.

Thursday, October 8, 2009

Here we go again

So. We were in for clinic today and we were feeling good about life. We hadn't seen hardly any blood over the last week or so (the occasional speck, but we can live with that). Blaise has been eating a lot more, sometimes giving me a "that's it?" look at the end of a bottle. Everyone should be happy.

First, the weigh-in and other measurements. She's at 13 lbs. 10 oz. and 25.5 inches. Her weight is up, but it's not as up as we'd like it to be. She's fallen off that 3rd percentile growth curve she was clinging to. In reality, no one follows a perfect curve and starts-and-stops are to be expected, but no one wants to see this continue. Ideally, she'd be gaining faster and we could start to reduce the overnight tube feeds, but for now we're just going to try to get her to eat more by mouth.

Hey! I have a great idea! Since the blood is lessened, let's give her some new foods, which would add some calories. That's what the nutritionist had in mind. That's what the GI had in mind. That's what we had in mind. Then she pooped blood during clinic. Well, crap.

Now new food is still on hold, at least until next week. We're stopping the steroid enemas because, honestly, they didn't seem to be doing much. We're sticking with the oral anti-inflammatory medicine and adding Flagyl, an antibiotic. Blaise hasn't tested positive for any bad gut bacteria, but we sent another culture for c-diff today. I guess even when they can't identifiy a specific bug, sometimes antibiotics help. At least she had the bloody stool during clinic and not 3 hours later when we had been told that all was great and full speed ahead. I was also starting to get paranoid that her GI thought we were crazy because he had never actually seen blood in her diaper. So now he knows we're not crazy. At least, not crazy in a making up medical symptoms kind of way.

It's hard to not feel a little defeated because no one knows for sure what's causing this or how to treat it. It will lessen and then worsen for no apparent reason. Adding the new antibiotic to Blaise's med schedule puts her at 14 oral/tube doses of meds or supplements daily. We need a spreadsheet to keep track of them all. If the Flagyl doesn't help and all the cultures remain negative, they'll want to do another colonoscopy. I know it could be worse. It could be a lot worse, but I still don't have to like it.

As usual, if you didn't read this blog, you would never know to look at Blaise that anything is up. She's active, cheerful, eating, sleeping and babbling up a storm. Her phoneme inventory exploded last week, going from just b, d, w to include m, n, g, l and several new vowels in the space of about three days. She enthusiastically joins conversations as well. She's just a happy, generally healthy baby who happens to have blood in her diapers.

Monday, October 5, 2009

Pittsburgh and back

We made it to Pittsburgh. We made it home. We had fun in between. Blaise had a great time being adored by grandparents and other friends-and-relations. She met her great-grandparents on Ben's side as well as two great-uncles and a great-aunt, played with her dad's old baby toys and slept through both flights. Blaise seems to be an easy-going traveler, which bodes well for future trips to see family as well as a return to our academic vacation habits (i.e., conferences in cool places).

Here are a few lessons Blaise learned on her trip:

First, if Grandma Janet has jewelry on, try to steal it.

Second, people who look just like Grandma, but older, are great-grandparents. They're lots of fun.

Also, the rings-on-a-stick toy is fun for all ages.

Finally, camouflage is very helpful for sneaking up on sleeping dads.



We had fun, but we're glad to be home. More pictures are up on the photo site.

Monday, September 28, 2009

Swings, games and other adventures

We've all been doing well. On the medical front, we're still seeing some blood, but not as much. (I hope I didn't jinx it by saying that.) We're also still on hold for new foods, so it's just been formula and rice. I know Blaise doesn't care, but it's driving me crazy. On the more fun front, Blaise continues to roll all over the place and she's started with longer, more sustained babbling. Her current consonant inventory is /b/, /d/ and /w/, with the occasional accidental nasal. Mostly she produces sustained open vowels, but with lovely prosody.
Last week, we took a trip to the playground with Blaise's buddy Auden. Auden tried, once again, to eat rocks. Blaise showed a bit more restraint. The big hit, of course, was the swing.




We also went to a games party this weekend, where Blaise got to meet still more people who have been reading about her off and on. One of our Southern Hemisphere readers will be glad to know that Blaise has learned to play Ticket to Ride and is ready to take on all challengers. We figure it's good to start early on the geeky road to German board games. I hear they make Settlers of Catan for children. In further geek indoctrination, Blaise went to work with Dad this afternoon, where she read about the brain. Note to Aunt Libby: It's going to take more than one trip to Bloomies to undo the years of geek influence. Once a nerdling, always a nerdling.

Expect a bit of a break in posting because we're preparing for our next adventure: a trip to Pittsburgh to visit Ben's family this weekend. I'll be sure to give a good update when we get back. For now, new pictures will be up on the photo site momentarily. Enjoy!

Wednesday, September 23, 2009

Other kids

We have mild to moderate (totally rational!) paranoia about Blaise being around other kids. Kids are disease vectors: they stick everything in their mouths, including their hands and sometimes other people's hands. Blaise does it, too. But we really don't want her getting sick because short guts have a harder time fighting infections and what would be a regular bug in a typical kid could be a very serious illness in Blaise.

Still, we can't keep her in a bubble and it's really important for kids to see other kids. So this weekend we headed to a birthday party for her buddy Auden's mom where Blaise was one of four babies. She and Auden tried really hard to eat rocks and leaves out of the yard. Great fun was had by all, in spite of some killjoy mom types vetoing the rock-based diet. This evening we took her to a group for families whose kids have medical needs. I don't miss much about being in the hospital, but it is nice to not be the only person in the room whose kid has a g-tube. There was a point a while ago where I joked that half the kids under 3 that I knew had tubes. It's not that I want other kids to need tubes, but it can be comforting to know that other people are dealing with similar issues. As usual, seeing and hearing about the things other families are working through gave us a lot of perspective on how fortunate we are that Blaise is as healthy as she is. While we talked with other parents, Blaise enjoyed the fawning attention of several off-duty therapists and one very interested two-year-old. Did I try not to panic when Blaise stuck all of the toys in her mouth? Yes. Did I succeed? Sort of.

And speaking of other kids, Blaise has another new little friend. We are delighted to say "Welcome to the world!" to Oliver, who was born to our friends Vanessa and Greg over the weekend. I'm sure playdates will ensue.

Saturday, September 19, 2009

Keeping on

Well, Blaise's blood counts did drop again, but we're going to keep with the current protocol for a while longer. We're trying to give the sulfasalazine (the anti-inflammatory) a chance to get working before we do anything drastic. The real issue with all of this is that what Blaise has looks like a food allergy in some ways: right kind of white cells, very typical allergic symptom, flares up in response to changes in diet, but it isn't quite acting like a food allergy: doesn't stop in response to dietary changes, sometimes stops without dietary changes, doesn't improve in spite of a seriously hypo-allergenic diet. To quote her GI doc, "this doesn't make any sense."

But lest you get too worried, here's what the surgeon from the CAIR team (and fellow MIT alum) said upon walking into the exam room on Thursday: "Hi, Blaise! You look great!" She was standing on my lap, happily bouncing. She tried to steal the GI fellow's key drive. She wanted to play with the nutritionist's calipers. She doesn't seem like a sick baby, which makes it all the more frustrating to not know what's going on.

So enough with the downers. Here's what Blaise has been up to while not freaking us out with bloody diapers. She has discovered that by rolling several times, she can go places. Very dangerous discovery, that. She is desperate to crawl, but she just doesn't have the strength in her arms. We're going to try some tummy time on a yoga mat to help her with traction. She's very interested in feeding herself, grabbing for her bottle and trying to guide it into her mouth, even though her hands aren't big enough to hold the bottle itself. She also loves to play with the spoon and tries to feed herself rice cereal. It's a big mess, but it's very fun. I took some pictures of that mess yesterday. When I find the cable for transferring photos from the camera, I'll get them up.

Thursday, September 17, 2009

Clinic recap

We headed in for short gut clinic today. We gave the usual spiel and an update on the blood situation. (Hint: It's still there.) The good news is that in spite of her bout of throwing up over the weekend, Blaise has grown well since we were there 10 days ago and is now 10th percentile for weight and length based on her corrected age (7 months). She's still not on the curve for her real age, but that's to be expected. They're very happy with her growth. Her color is good, she's very active and alert and seems healthy as can be. The bad news is that the blood still has us flummoxed. We drew labs to check her blood counts. The nurse practitioner will call in the morning with the word on those. We're keeping up with the nightly steroids and the oral anti-inflammatory. Between supplements and actual medications, Blaise currently gets 9 oral doses of something a day. We're going through a lot of oral syringes.

In much more fun clinic news, we were able to catch up a bit with Faith (a fellow Omegaven baby) and her mom. They first came to Boston from Colorado for Omegaven a bit before Blaise's second surgery. Their fantastic news is that Faith is thriving off TPN and her central line came out yesterday. Huge congratulations to their family! We also met Sam's dad, but not Sam himself, as he, unfortunately, was in surgery to get a new central line. Sam's family travels from Wisconsin for Omegaven. Talking with other Omegaven families is always nice because, no matter how hard they try, most people just can't understand what living with short gut is like. Hearing war stories from other parents also makes us realize just how fortunate we were to live in Boston where Blaise got the care she needed with minimal fuss. We wish both families safe journeys home.

Tuesday, September 15, 2009

Full disclosure

We post a lot of happy and cute photos of Blaise. We've had several people tell us that we must have the happiest baby in the world. She is pretty easy-going most of the time, but in the interest of honesty, I'll confess that she can be fussy; we just don't tend to grab the camera when she's crying. She's going through a very clingy period right now and sometimes even stepping to the other side of the room can cause a crying jag. Today, I was putting the liner back in her diaper pail, having emptied all of the clean diapers into her crib for folding. This is what happened:

How am I sure these were crocodile tears? Well, here's a photo from about 10 minutes later after we finished folding the diapers:
In other news, we've started the new multivitamin, which is going well so far. At the very least, Blaise doesn't spit it up within an hour of taking it, an improvement over the last vitamin. We had no luck getting the blood under control by removing everything interesting from her diet and giving her nightly steroid enemas, so we're giving up on the project of figuring out what she's reacting to and giving her an oral anti-inflammatory medication. Her blood counts have apparently been dropping over our last few visits to Children's, indicating that she is losing significant blood over time, which no one is happy about. It's really important that we control the bleeding in her gut if it has begun to compromise her red blood cell counts and push her toward anemia. If her counts don't stabilize soon, we may have to be readmitted for "bowel rest" (or putting her on an IV so we can stop feeding her for a day or two, which really, really sucks). We have clinic on Thursday. We'll figure out then what to do next.

Sunday, September 13, 2009

Doing better

We are pleased to report that Blaise is much more herself today. She's still a little off in terms of eating, but she's been playful and fairly happy. No more vomiting, either. The g-tube is great for getting Pedialyte into a sleeping baby at a slow, steady pace, especially when that baby won't take Pedialyte by mouth. Another perk of the g-tube.

Blaise was even feeling well enough to make an appearance at our block party. She particularly enjoyed watching the bigger kids run around and trying to make friends with the other baby on the block (who is 2 months old and was asleep). Other highlights included the neighborhood dogs and our state representative, who was particularly taken with Blaise.

More recent photos are up on Picasa (links to the left). Look for shots of Blaise playing with her food in her new high chair.

Saturday, September 12, 2009

GI bug

Blaise has been fighting a bit of a cold for about a week. Last night, she was having some difficulty with a bit of mucus in her throat and then threw up. We thought, okay, she swallowed the mucus and then up it came. But then she threw up after her bottle this morning. And again a couple hours after lunch. Not spit-up, which we're quite used to, but actual vomit. And she's not very interested in eating. And her poop is really runny.... We called the pediatrician (whose off-hours triage line goes to Children's) and the over-the-phone diagnosis is gastroenteritis. Blaise has a stomach bug.

I remember being told, way back at the beginning, that Blaise would be particularly susceptible to gut nasties and that other kinds of viruses (e.g., colds) could migrate to her gut very easily. It seems like that second thing has happened. We have her on continuous g-tube feeds of pedialyte right now and we'll try some half-strength formula in a couple of hours. Like any sick baby, fluids, rest and cuddling are the current plan. And laundry. Lots of laundry. We're hoping to stick to the regular sick baby plan and avoid a middle-of-the-night page to the GI on call at Children's.

Friday, September 11, 2009

Brunch with Blaise


I don't actually have very much to say here, but this is just too great a photo to not post. Here's Blaise sitting at the table with me, Erin, and her Grandma & Grandpa Balas at Johnny D's (our favorite brunch spot). We've been regulars there for a pretty long time now, but went on a serious hiatus while Blaise was an inpatient. I think the host and the waitstaff were all pretty stoked the first time we came in with a stroller...recently, instead of having her hang out in the car seat, we've been giving Blaise a shot at sitting up in a high chair so she can see what's going on. As you can see, it works pretty well:



Blaise is a big fan of the menu, incidentally. By that I mean she likes to eat the menu itself rather than order anything from it. No accounting for taste, I suppose...we've just taken to keeping one with us for the duration of our visit.

A pretty quiet cloudy day here in Boston, which seems to have made Blaise very interested in snuggling down and reading. Not a bad way to spend a day, or even a whole weekend.

Wednesday, September 9, 2009

Superstition

Before you, our friends, take any offense, be warned that we might not update to say that the blood is improving even if it's true. I'm beginning to suspect that the act of telling people that things are great on that front might be what causes the blood. I never thought of myself as a superstitious person, but now that I think of it, that might just be because I was comparing myself to a bunch of Irish Catholics.

Blaise is doing great, though. She doesn't seem to mind the Elecare-and-rice diet nearly as much as I would. We had a nice, relaxing at-home day, having cancelled her early intervention appointment yesterday when we thought we were being admitted to Children's. Instead, we played the very fun game of "Try to fold all of the socks before Blaise soaks them in drool." (She grabs them out of the pile and slimes them in a very systematic way.) I talked with the GI this afternoon and the current care plan is to stick with the status quo on food and go back to nightly steroid enemas until our clinic appointment next week. We're trying to adjust to the idea that this might just be what Blaise's gut does in response to many things and that the process of introducing solids could be very start-and-stop. It's frustrating because she's doing so well everywhere else. Even the GI doc said as much. It's hard to know what to do about a kid who is great but having one troubling symptom.

Tuesday, September 8, 2009

Back the same day

Blaise seems determined sometimes to keep things more interesting than we'd really like. After almost a full week of basically no scary/bloody diapers, what did we see (repeatedly) late last night and this morning? You got it: extremely scary/bloody diapers. Obviously no one wants me to go into detail, but suffice it to say that Erin and I have acquired a fairly high freak-out threshold for this sort of thing by now and we were both thoroughly rattled.

So we called our NP at Children's and hung up the phone pretty certain we were going to be re-admitted. I wrapped up things at work as quick as I could, reserved a Zipcar for the day, and drove home while Erin got Blaise ready to go with a bag full of toys, books, and all the necessities. Thankfully, we didn't have to go through the ED. We went straight upstairs to see her old friends in the CAIR clinic and made visits to outpatient blood draw and radiology after giving a quick history upstairs. We kinda figured we were looking at having to go NPO (no food) in preparation for another colonoscopy and weren't thrilled about the idea, but what do you do? Blood is scary...wicked scary, as they say in Boston, and ruling out or addressing anything serious is critical when you've got a sudden change like this.

The blood draw came back looking totally normal...white counts were fine, red counts were fine. No problem. The X-ray? We started getting worried because the "2nd look" they told us to wait for seemed to be taking a while. Very hard not to have flashbacks to the ultrasound
we had at 20 weeks along...we both have a very acute sense of how long "2nd looks" should and shouldn't take, and this felt like it was veering into the realm of too long. Happily, we were freaking out over basically nothing. Well, not actually nothing, but not anything surprising or outside the realm of what we've seen before. Her GI doctor could see inflammation in the sigmoid (the bottom bit of the colon) which is very likely to be the source of the blood. Why is it inflamed? Her blood labs, while in normal range, also showed evidence of eosinophils,which are the kind of white blood cells you see following an allergic reaction. What does that add up to? More or less exactly what we saw a little while ago, just with worse bleeding last night.
Maybe bananas are the culprit...maybe something else. Either way, she looks great, played and napped pretty well despite the impromptu trip across the river, and her team thinks just holding off on the new solids may do the trick for now.

A bit scary, a bit frustrating, but Blaise is sleeping in her bed right now and we both feel a lot better for that. Atka the polar bear is always ready for duty, but it's nice that he (and us) get to hang out with her at home. What does this all mean in the long term? A little hard to say unfortunately, but our doctor tells us that babies tend to grow out of this even if you don't ever find a root cause. This may mean we have to move a lot slower than we'd like, but Blaise has done well with slow and steady before.

Speaking of doing well, one very nice thing to come out of all this (and our previous return visits) is that everyone there is very happy with how she's growing and how good she looks overall. We had a request for some statistics on our last post, and we are of course happy to oblige: Blaise weighs approximately 0.407 slugs and is just under 0.373 Smoots long (that's also 2.058 x 10^-17 parsecs for you astronomically-minded readers). It's great to see such progress!

OK, today was a bit stressful and scary, but yesterday was great fun. Blaise got to hang out all day with us and our friend Kate, who went with us on another fun trip to the local playground. Just like on our first adventure, the swing was a big hit:


We thought the slide might be equally fun, but I get the impression Blaise was less certain about it:


Sunday, September 6, 2009

More fun with food and family

I am pleased to report that Blaise likes bananas much better than she likes avocados. She's not had any issues from them, so hopefully they can stay in her repertoire. The rice-cereal-and-elecare diet was getting a little dull, at least for me and Ben. Blaise didn't seem to mind. Still, a little variety is a good thing and we want to make sure she doesn't lose interest in different tastes.

We were in Providence on Thursday so I could retrieve some data and meet with my PhD advisor about a paper. Blaise came along to meet all of the people at Brown who have heard plenty about her. She did very well on the car ride and had fun making new friends. Did she nap? Not until we got in the car to go home, so she was a little less than cheerful for the last half hour or so that we were there.

Then on Saturday, we took a walk to the park to play on the swings. We'd never tried that before and Blaise loved it!

Ben's parents came into town yesterday afternoon and left just a couple of hours ago. It was nice to see them as always. We took advantage of their car to make a trip to Babies R Us for a high chair and Costco for 88 lbs of cat litter. Blaise did surprisingly well at both stores, especially since she hadn't napped in the morning. Then she fell asleep on the way home.

Ordinary baby stuff. We can live with that.

Wednesday, September 2, 2009

Avocado, Take 1

Blaise woke me up this morning at 4:50 AM. Most of the time this is a quick diaper-change-and-cuddle event and then she's back to sleep. Not today. I'd say I at least enjoyed the sunrise, but you can't really see the sunrise from our apartment. There's a building in the way. Instead, I enjoyed some coffee.

We seem to have officially decided that the culprit for the blood was the multivitamin. It turns out that the insurance won't cover vitamins, but the new one is less expensive than the one we were buying before, so it's not that big a deal. Having absolved solid food of any responsibility for blood, we were cleared to start introducing new solids again.

Today we tried avocado. We're working alphabetically through the fruits (started with apple; banana will be next; apparently skipping apricot). First I let Blaise sort of suck on a chunk of avocado while I held it, but she kept grimacing. I thought she might not like that approach to eating, so I mashed some up and gave it to her on a spoon. She took two tiny bites, grimacing at both, and then gagged and vomited. Not just spit up, actual vomit, which she almost never does. Fearing that I had somehow induced an instant oral aversion, I cleaned her up and then tentatively tried some rice cereal. She scarfed that down as usual. I guess she just doesn't like avocado. We'll try again with it in a little while, but maybe it's time for banana.

Tuesday, September 1, 2009

Adults say the darnedest things

Overall, Erin, Blaise, & I have been pretty fortunate as far as rude/strange comments from people go. Sure, we've had the occasional odd look from someone when they've noticed the feeding tube, but all told we've encountered far less of that sort of thing than many parents we know. Still, every so often someone we run into apparently has an uncontrollable urge to say something ignorant or idiotic to a complete stranger, and luckily we're there just in the nick of time.

Now the few times this has happened to me, it's always been the case that the person in question probably had no idea that Blaise had any kind of medical condition. They were just engaging in the usual "Let me tell you how I raised MY baby..." kind of stuff that must sound like "good advice" to them and actually comes off as "pompous" to the rest of us. I usually just nod in a non-committal way and say things like "That's great" or "That's really interesting, thanks."

Today's encounter wasn't so much different than others, but for some reason it got under my skin. Blaise and I were heading up to Arlington to pick up some meds from her pharmacist (who's this incredibly nice guy named Larry) and at a particularly long stop light, this woman looks into the stroller and sees Blaise:

Her: "What a cute baby! What's his name?"

Me: "Her name's Blaise."

Her: "Oh! She's a girl. She's dressed like a boy, you know."

Me: "Sure. Y'know...lots of hand-me-downs. She likes shirts with animals on them."

Her: "How old is she?"

Me: "8 months today."

Her: "My goodness! She's so SMALL! I can't believe she's really 8 months. She looks like a much younger baby than that."

Me: "Well, she came a bit early..."

Her: "MY Bradley was much bigger when he was that age. MUCH bigger. He was such a big strong baby...definitely a lot bigger than that."

...now there's lots of ways I could have responded. The old smile-and-nod would've gone fine. So would anything from my repertoire of interested-sounding-grunts, I bet. For some reason this got to me though, so I decided to let her have it.

Me: "Yeah. I bet he was born with all of his intestines."

Her: ...

Me: "See, she's only got about a third to a half of what she's supposed to have. Surgery the day she was born. Big scar on her belly and a lot less intestine. She's got a feeding tube into her stomach, but we only use that at night now. SO much better than the IV."

Her: ...

Me: "So yeah, she IS a bit on the small side."

Probably not my finest moment, but not exactly her peak either. People are so weird. Who looks at a baby that's on the small side and tells the parent about how much bigger and stronger their baby was? We were of the opinion that stupid parent one-upsmanship was nuts when we thought Blaise was going to be your typical healthy baby. In light of what actually happened (and the many parents we know facing more difficult circumstances), nothing seems more petty.

Blaise and I kept walking and we ended up witnessing a minor traffic accident (it was an eventful walk). One car rear-ended another fast enough that the next three cars ahead in line ended up damaged. Everybody pulled over and the woman in the first car to be struck got out rubbing her neck and holding her arm a bit funny. Passers-by were gawking and the people in the cars were obviously doing the insurance/"do we need to call the cops?" song-and-dance. Doing my part to help by mercilessly rubber-necking, all I could think was that the woman I just spoke with clearly had no idea how little it takes to push anybody beyond what is normal and easy and convenient. Those people in the cars? 60 seconds ago everything was normal and boring, and all it took was one idiot texting while he was driving (yup, for real) to seriously mess up their day. If his foot had been just a bit heavier, it could have been much worse.

I'm clearly over-thinking all this, I know. To a certain extent, the fact that parents feel comfortable saying rude and implicitly judgmental things to us in public must be a sort of commentary on how well Blaise is doing. Still, I guess it served as a reminder that no matter where we go from here, I will likely never think about kids, mine or anyone else's, quite the same way as other parents.

OK...enough heavy stuff. The little cub had a great day today, just hanging out with me after I had another long day of testing at MIT on monday. We walked a lot, we played a very fun game of hide-and-seek with one of her teddy bears, and she even took a solid nap in the afternoon, which she rarely does for me. Of course, she made up for it by shrieking for a decent chunk of the early evening, but so it goes.

More pictures soon!

Monday, August 31, 2009

Cows and other weekend fun

We're settling down after another busy weekend. My dad was visiting on Friday and Saturday. Blaise had so much fun with her Grandpa Tom that she didn't take a real nap either day! It was, as usual, fun to show Blaise off to someone who hadn't seen her in a while. She's getting to be a big kid and is lots of fun to play with.

Then on Sunday, our friends Kate and Andrew were having their joint birthday event, a long bike ride to Great Brook Farm for fresh ice cream. We didn't bike, but we did drive out to meet everyone else. The ice cream was great, the cows were smelly and our friend Reid made a new friend.

We did let Blaise have a teeny-tiny taste of ice cream. I'm not even going to think about all the reasons we shouldn't have done that. We're kind of paranoid about her and food, for good reasons, so we only gave her the smallest bit. She loved it and kept licking her lips for more tastes. She didn't seem to have any bad reaction; if anything, the blood issue was actually better post-ice cream. Clearly we should be giving her tiny bits of vanilla every day. The only damper on the afternoon was my realization that I had left the nipple for Blaise's bottle at home. There goes that Mom-of-the-Year nomination. Fortunately, she fell asleep on the ride home before she got too hungry.

Today, Blaise went to MIT to see where Ben works and to meet his colleagues. This was her first ride on the T. She did really well and particularly enjoyed meeting Charley, Ben's advisor's dog. A lot of people ask if Blaise will go to MIT, especially when they see her MIT mobile and learn that Ben and I both went there. We always say that she can go wherever she wants except CalTech. She is very interested in playing with her rocket ship, but her enthusiasm for literature can't be ignored. Just yesterday she was making some intriguing observations about Finnegan's Wake (board book edition).


Word from the CAIR folks is that we are not going to try a systemic anti-inflammatory. We're switching to a different multi-vitamin, once we get the insurance worked out. Hopefully, this will resolve the blood issue. We're also holding off on new foods for a little while longer. I didn't tell them about the ice cream.

Thursday, August 27, 2009

When pluses become minuses

One of my favorite things about Blaise is how interested she is in the world. She loves to ride facing out in the wrap or the baby carrier so she can check everything out. She only gets overwhelmed by busy places when she's really tired. This curiosity and interest in what's going on around her is a really fun aspect of her personality. Right now, though, I think it's frustrating her a bit because she can't move herself around at will.

Her therapist was working on getting her to try scooting, but Blaise just doesn't have the arm strength. It's her main physical weakness. She can hold herself up on her arms only for a few seconds at a time and she can't use them to pull herself anywhere. But she really, really wants to! There are cats to chase! Holding Blaise while the cats are nearby has become a serious challenge. She struggles and leans to reach for them, often squealing gleefully. They run and hide. This, kiddo, is why you should take your tummy time more seriously. I suspect that once her arms are strong enough, there will be no stopping her.

I have really mixed feelings about a mobile Blaise. Of course I want her to grow and develop skills and become independent. I just have a sense that this kid is going to be very independent and very curious, which are good attributes in the long run, but tricky in a toddler or older infant. Her interest in her g-button causes us enough stress and I can't tell you how glad I am that she no longer has a central line to play with or an ostomy bag to pull off. Once she gets moving, our lives are going to become even more chaotic than they currently are. The cats have already placed ads seeking new families on Craigslist. We, on the other hand, should start babyproofing in earnest.

Monday, August 24, 2009

Not much to report

Blaise is doing really well. We're in phase 2 of Operation No More Blood. We stopped giving Blaise her vitamins late last week. We've definitely seen a decrease in the amount of blood, but we're still seeing some. We're also, obviously, not crazy about having her off her vitamins. Short gut kids can have big problems with vitamin deficiency and we'd rather not go there.

Between diapers, though, we're having lots of fun, especially with the exersaucer (on loan from her buddy Max and his family). Now Blaise can bounce up and down and play with toys at the same time without giving me a serious core-muscle workout. She's also increasingly finding her voice and we're hearing more and more consonants (mostly nasals and voiced stops). She's working hard on some teeth, which means that everything goes in her mouth and the drool factory is running 24/7. New photos featuring both the exersaucer and drool will be up soon in the album called August.

**Update** It seems we've been a little shutter-happy and Blaise has been very photogenic lately. There are tons of new photos up.

Friday, August 21, 2009

Thursdays with Dad


Here’s a statistic: Something like 90% of a baby’s diapers are changed by it’s mother, regardless of whether the baby’s father reports being “very involved” in child care. Even when couples report that they try hard to be co-parents and be equally involved in their child’s care, Dads have a tendency to err on the side of playtime and an ever more pervasive tendency to brag later about how much baby maintenance they do.

This came up at a meeting with my post-doc advisor at Children’s while we were talking about the design of a study. The lab is very interested in how kids’ experience with different people, places, etc. can influence their development, so the question of what kind of time kids spend with Mom and Dad is highly relevant. Erin was pregnant at the time of this discussion, and I remember silently vowing to not leave her stuck with all the dirty diapers. This was well before we had any sense that anything unusual was going to happen…we were still just overwhelmed with trying to figure out how to be a dual-career couple with a newborn. Teamwork, I figured, REAL teamwork had to be the only way to make this work. Erin & I are both very defensive of each other’s careers and try to make time for each other to get important things done…we got through writing our dissertations that way, we’ve made it to the finish line when racing against grant and conference deadlines that way, and I figured it had to be the best way to take care of Blaise. Typical parental investment statistics be damned! I was going to change a lot of diapers. Now look, Erin’s changed more…but I do think we’re not so near that 90/10 split I mentioned earlier, even if we’re also not at 50/50.

On a typical day, we trade off morning and afternoon shifts, which is a great way to maintain parity. It also encourages serious optimization of your time. When Blaise naps on a work day, the first thought is always “OK, how much time do I have and what can I do?” Laundry is quick to get started, GO! Eyetracking analysis needs 30 minutes and I can easily stop halfway…GO! Coffee! I made coffee earlier! I should drink it! GO!

It works out pretty well, really, but it wears you out…and then, you go to work.

Yesterday though, we did something we hadn’t really done before and it was awesome. I’d spent a lot of time last week working long days at MIT, leaving Erin flying solo, so Thursday was my day with Blaise. Just the two of us, with lots of time to take care of what she needed done, play with whatever we wanted, and do household chores without playing beat-the-clock. Here’s a great game we developed:

1) 1. Dad builds a city out of busy blocks.

2) 2. BLAISE DESTROYS

3) 3. Dad attempts to rebuild Neo-Tokyo in the wake of disaster.

4) 4. BLAISE DESTROYS

5) 5. Dad builds a series of ranch-style houses that are less prone to earthquake/giant baby damage

6) 6. PETER RABBIT DESTROYS

Awesome. Seriously, it was great fun and Blaise was extra-cute all day. I also do still occasionally stop and marvel at the fact that we can take care of Blaise. It was often hard to see through the tangle of tubes and wires how we were going to be able to do that without a lot of professional back-up. Being able to spend a whole day with her with no back-up is pretty great, even if she doesn’t always want to nap.