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.