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.


video
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.