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.

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.

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!

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.

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.

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.

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.