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 pot stickers seems to be rather fickle, she’s nearly always ready for some noodles. But she didn’t even feel much up to eating noodles for dinner. So I gave her a glass of that Carnation Meal-In-A-Glass (I don’t remember what it’s really called) and got her ready for bed.

  • 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, so click the link and enjoy.

  • 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 things wrong all the time. My dad likes to say, “that’s why they call it practicing medicine.” Funny, but true. But what’s not funny is when it could turn your whole life upside down. It could result in worsening sickness. It could result in death.

  • Orthotics appointment today

    Jessica took Namine in to see orthotics today. Namine’s AFOs have been bothering her lately; she can’t seem to tolerate anything more than four or five hours in them, when she should now be able to wear them all day. They figured that the braces just need to be adjusted – growing girl, you know – and that should fix the problem.

  • 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. In this case, it was a retweet from Barbara of TherExtras: “How do you communicate with your child with no words?” To be fair, the author of the original tweet has a nonverbal child – unlike Namine, who was merely delayed in her speech because of the trach and jaw issues. Since all of these issues have been resolved, Namine can learn to speak, and she is. But it wasn’t so long ago when things were different.

  • Night trip to the ER

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