September 2013

  • Namine’s quote of the day

    Daddy, it’s a bug! Quick, you gotta BAM it!

  • An argument on the grody-ness, or not, of girls

    Me: Girls are grody. Namine: Girls aren’t grody, you’re grody! Me: I’m not grody, you’re grody. Namine: You are! Me: You are! Namine: You are! Jessica: Would both of you please stop arguing!

  • Bowling and frozen yogurt

    Bowling and frozen yogurt

    Today we took Namine bowling. We’ve played with her bowling set at Aunt CR’s house before, but this was her first time at a bowling alley. Fortunately for us, the alley had a wheelchair ramp and a special slide to make it easy for someone in a wheelchair to send the ball down the lane.

  • Namine’s shoulder

    We heard from one of Namine’s doctors yesterday. He called to inform us a bit about her right shoulder, which we recently discovered is not bad because of multiple line placements, but rather because of a birth defect.

  • The Cupboardy Lion

    The Cupboardy Lion

    Tonight Namine was playing with her Wizard of Oz toys from McDonald’s. She introduced every one of them to me.

  • Steampunk foxes

    Steampunk foxes

    Before dinner, Namine asked me how to draw a fox. I don’t really draw realistic things, like, at all, so I quick sketched out what seems to be a cat with a fox’s tail. No matter; it was good enough for Namine, and she sketched out a fox of her own. I thought it was pretty good.

  • What matters most

    What matters most

    Yesterday we found out that Namine’s most recent x-ray shows evidence of a congenital defect in her right shoulder. This was discovered by a tech, not a doctor, which surprises me. Of the thousands (yes, I have no doubt the number is in the thousands) of x-rays Namine has had done, this has not once been found until now, more than five years after her birth.

  • Another blood draw

    Another blood draw

    Remember those blood draws? Well, Namine had another one today, again to check her INR. They dropped her coumadin dose since last time, so here we are again.

  • CSS envelope and letter

    CSS envelope and letter

    I came across a tutorial online that caught my eye. It wasn’t the tutorial itself that I liked, though; it was the image they used in the header.

  • Despite the fear

    Despite the fear

    Since Namine’s chest incision from her heart surgery is taking longer to close than originally anticipated, she had to keep it covered with gauze and some tape over the weekend. She was none too happy about it, either, especially because her skin is very sensitive to adhesives.

  • Open letter to Rise Against

    Tim McIlrath and Neil Hennessy, I want to thank you for the song “Swing Life Away.” It has been an anthem of sorts for both me and my daughter, Namine. She was born with several birth defects, some so severe that doctors informed us, prior to her birth, that she would probably not survive long enough to go home.

  • You can’t win them all

    You can’t win them all

    You can encourage kids to play together, but you can’t make them get along. Not everyone is willing to learn, to compromise, to share; not everyone is open to the idea that different is not bad.