Eiche fam

Namine

Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.

  • Keep your chin up!

    Keep your chin up!

    Thanks to the awesome folks over at Pierre Robin Sequence Foundation for including Namine in one of their promotional images.

  • Namine’s Frozen medley

    Namine’s Frozen medley

    I learned two things today. First, if I have enough aluminum cans to fill my car, it can get us enough money to go see a movie. Second, I haven’t had a song stuck in my head like this since I saw Aladdin when I was twelve.

  • Celebrating a healthy heart

    Celebrating a healthy heart

    Six months after completing the Fontan, Namine’s heart is doing phenomenally well.

  • Beautiful disaster

    Beautiful disaster

    We prefer messes to perfection. The life of a parent is messy. There’s poop and vomit and grass stains and permanent markers and “How did you get that up your nose?” And you know what? We like it that way.

  • My child with a disability is my hero

    My child with a disability is my hero

    I’d like to explain why Namine is my hero.

  • Cute cacophony

  • Jumping around

    Jumping around

    I’ve been writing a lot about how Namine is regaining strength in her arms and legs, and I think that’s awesome. It’s crazy to think that it’s already been nearly six months since the Fontan.

  • Trying something new

    Trying something new

    It seems that it’s only when Jessica is sick that I get to take Namine to therapy.

  • Improving speech

    Improving speech

    Namine had speech and physical therapy today. She has her good days and bad days, as anyone does, and today was a particularly good day.

  • Sleepover

    Sleepover

    I was supposed to write about a sleepover with Namine from a couple of weeks ago but then college got in the way. What are you gonna do? But, anyway, I was lucky enough to be home this weekend and got another sleepover to write about!

  • Helping out

    Helping out

    Chores are no fun, I know. But in giving Namine things to be responsible for – like keeping her room clean, and sweeping the kitchen – we hope to provide a basis for establishing work ethic.

  • Namine’s stockpile

    Namine’s stockpile

    I love Nerf guns. I always have. It’s been a lifelong obsession of mine to get whatever latest crazy Nerf gun that has come out, whether I am going to use it a lot or not. (Hint: not.)