February 2011

  • A letter to the us we used to be

    I was thinking about this the other day, and I thought it might make a good post. I feel it’s especially appropriate today, it being Rare Disease Day, according to the Center for Rare Diseases. You know Namine has DILV – double-inlet left-ventricle heart defect – and that’s rare enough, I suppose. But she also…

  • Cardiology appointment tomorrow

    As we get closer to the Fontan, we have to learn the symptoms of low blood-oxygen levels.

  • Her quiet strength

    Yesterday morning, Namine proved that all the therapy with her legs and feet is paying off.

  • Pool therapy, again

    An alternate title for this post could be “crossing our fingers.”

  • How much is too much?

    Namine slept better last night than the night before, thankfully. She still coughs occasionally – and sometimes hard enough to make us think she’s going to throw up – but while asleep, thankfully, she seems to be free of it. She didn’t wake up screaming last night, but I didn’t make her keep the braces…

  • Down with the sickness

    I was up until about 3:00 this morning making sure Namine was sleeping all right. She’s had this cough, and it seems to get worse when she’s asleep. Even though she had a nap in the early afternoon yesterday, she was still cranky and tired. She didn’t eat much for dinner. Although her appetite for…

  • New videos of Namine

    I’d love to know what punk gave a “thumbs down” to Namine’s vampire video. You know, the one where I repel her with garlic. If you can’t have a little fun and laugh every once in a while, what point is there to life? Ah, but I digress. I have posted a couple more videos,…

  • Namine dancing to Batman

    As promised, here is another video. Jessica played the Batman theme on her phone, I supported Namine, and Namine herself danced. It doesn’t get much better than this. :)

  • When doctors are wrong

    Namine has an appointment with her pediatrician today, but as I haven’t heard from my love how that went (if it’s even over yet), I’ll talk about something else. Ellen from Love That Max tweets: “When doctors tell you bad things – and they are WRONG. My cautionary tale.” She’s got a point. Doctors get…

  • Orthotics appointment today

    Jessica took Namine in to see orthotics today.

  • On communication

    Every so often, I’ll come across a post or a tweet from other special needs folks that will inspire a post of its own here on our site.

  • Night trip to the ER

    Namine woke up at about 1:30 this morning, wheezing and gasping for breath.