Wolf Trap

I just got the summer schedule from Wolf Trap in the mail, and it reminded me that just 4 days before Roxanne was born, I interpreted for Fiona Apple at Wolf Trap. I don't usually interpret concerts, but I felt I could handle this one because I've been a fan of Fiona's for years. Delve into her lyrics and it's all angst, all the time. It wasn't easy, but it was awesome.

I wore my pager throughout the concert, ready to bolt if my baby was born that night.

Friends + warm weather = : )

I hear that the blogosphere is clamoring for more photos of Roxanne. Your wish shall be granted.

I haven’t written lately, because things with Roxanne have been blissfully (dare I say it?) calm. No seizures. In fact, let’s assume she hasn’t had any unless I say otherwise, shall we? Roxanne is, at this moment, sitting in her bouncy chair next to my computer desk, drooling and whacking the crap out of her “ring o’ monkeys” toy. It doesn’t make for riveting journalism, but it makes a good life!

Roxy still has the feeding tube, and some folks I know seem way more anxious about getting it out than I am. Her swallow study is next week, and frankly, my expectations are low. She hasn’t eaten anything by mouth in four months, and she’s totally uninterested in sucking on pacifiers. Even if she is able to swallow, she may not be too keen on the whole eating thing. We’ll see what happens.

Dan, Roxy and I been spending a lot of time with friends lately, which I just love. Thanks to the warm weather (which I also love), I was able to go for a walk on the W & OD trail with KJM and her son, who is about Roxanne’s age. (By the way, I feel very mommyish with a stroller, and even more so when there are two moms. And yet, I still try to be cool.) We went to JE’s house for Sunday brunch with the adorable G & SH family. This week, the soon-to-be-married J & K came over for dinner, and Dan grilled up some deliciousness. And last night, MM and her husband brought me more of those amazing cupcakes from Chicago!

Today, I think we're going to Paddington Station to get some warm-weather clothes for Roxy. When I got home from work yesterday, Roxy looked hot in her long sleeves, so I dug out the only short outfit that still fits (barely). I was clueless about what size Roxanne would be when the weather changed, so I’m in reactive mode. Oh yeah, I need a hat for her bald head, too.

One month, plus some

First things first: Roxanne has been seizure-free for over a month. Part of me is just amazed as each day passes without seizures, and I’m ready to put the whole thing behind us. Another part of me is scared to death she’ll start having them again.

In the meantime, Roxy has been allowing her doting grandparents to visit and adore her. My dad and his wife were here a few weeks ago, and Dan’s parents were here over the weekend. I guess everybody wanted to come here and see for themselves that she’s doing well since the surgery, and Dan’s dad finally got to meet her. It was delightful to see all the grandparents making faces and funny noises to see the baby smile, plus the company was welcome. For “fun,” Dan’s mom kicked our butts playing Rummy. (And she seems so mild-mannered!)

Roxy got her first immunizations last week, and reacted typically - a bit of fever and crankiness, but not too much drama. Her latest project: cutting her front bottom teeth, with a corollary of chewing on one or both hands while drooling copiously. She is generous enough to offer her soggy hand to anybody nearby.

I finally got an appointment with a swallow specialist this week, and an appointment for a swallow study under fluoroscope in two weeks. Dealing with the feeding tube is annoying. The more Roxanne wiggles and rolls, the more the tube winds around her, like baby macramé. One way or another, something’s gotta change soon.

Otherwise, Roxanne seems more and more like a typical kid. She’s babbling almost non-stop, and her muscle tone seems to improve a little each day. She’s strong enough that she can sit on my hip while I walk. It feels very mommyish.

Here she is on her belly, where she spends a lot of time these days.

3 weeks

Three weeks have passed since Roxanne’s surgery, and her recovery has been miraculous. She’s had no complications, and no seizures. 21 days and counting!

She seems to be developing more quickly now that her life isn’t interrupted by seizures. For example, she recently went from making only vowel sounds (mostly “ahhhh”) to “da” “ba” and (my favorite) “ma”. Just this week, she figured out how to flip from her back to her belly. Granted, she gets stuck in the prone position and we have to rescue her, but one thing at a time. She can sit with support, and does that cute thing where she falls over like a drunk.



Roxy likes to play with toys that make noise, clack, or ring, and she likes to slap tables and hands. (I discourage her from slapping faces, although I can understand the temptation.) I try to avoid electronic toys that make noise on their own because A. They tend to be annoying and B. The developmental pediatrician said that Roxy would benefit most from cause and effect toys. Besides, I grew up in a mostly non-battery-powered toy household, so it feels right.

I’m working on getting an appointment with a swallow specialist (actually, speech therapists handle swallow issues, but the title is confusing) to figure out how to re-introduce oral feeding to Roxy. Her feeding tube is getting really tiresome. Roxy is tethered to her feeding pump 20 hours a day. What happens when she can roll across the floor? I worry that she’ll have to have the g-tube surgery after all. Luckily, Roxy hasn’t developed oral aversion like some kids do -- she has her hand in her mouth all the time, so she should do OK with a bottle. I hope.

Since Roxanne is doing so well, I decided to go back to work one day a week. My first day was today, and it’s true, it was like riding a bike. It felt good to use sign language again. I read somewhere that an unused talent will eventually start poking at you to be let out to play, and I was experiencing something like that. We’ll see how working goes –- the great thing is that as a freelancer, I can take as much or little work as I wish. I left Roxy with GP, a good friend who watched her in the early days of her seizures when I needed help just to get a few hours of sleep. Yay!

This is the paragraph where I send out the love. My friends are wonderful. FlirtaciousJ, KJM, SH, and MM kept me company while Dan was out of town last week. MM even brought me some scrumptious cupcakes all the way from Chicago (good God, they were delicious!) CY drove an hour to visit and give me some much-needed cooking (and general mommy-ish) tips while whipping up multiple meals to freeze and eat later. I also had a great visit with my Dad and his wife, who flew up from Florida. Roxy loves her grandparents, and it seems the feeling is mutual. It’s lovely to watch.