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.
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Speech appointment
We had an appointment today with the speech pathologist. (Yes, that one.) It went far better than I expected. In fact, we now have solid evidence that not only is Namine speaking better with the palatal prosthetic in, her speech is improved when she isn’t wearing it.
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First day back since the Fontan
It wasn’t Namine’s first time back to therapy since her most recent heart surgery, of course. But it was her first time walking. Not just doing more at home, climbing on things – although no one was more thrilled than her when she got the green light to climb again – but really, truly working…
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Everybody was kung fu fighting
I got home from work to hear Namine making kung fu noises. Turns out she found one of my games on the PS3’s hard drive – Invincible Tiger.
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An intense weekend
Actually, just one tent. Geddit?
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Drawing what she knows
Jessica showed me something interesting last night. Namine had drawn her hand on the chalkboard. After doing so, she filled in some details, including the crease of skin between the palm and fingers, and the blood in her veins. I find this fascinating.
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How do you explain anthropomorphism to a five year old?
Today Namine was watching The Three Musketeers (the Mickey Mouse version, not the wire-fu version) and she asked, “Why are all the animal boys and girls dressed like people?” It was not a question we were prepared for coming from a five year old.
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Shooting at Children’s Hospital
I only heard about this when a friend tagged me in a Facebook post about this. He works at Froedtert, but thankfully he was off-campus when it happened. As for us, we didn’t have any appointments at the hospital today, so we were nowhere near.
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Excitement and improvement
Jessica decided that we should name Namine’s palatal prosthetic. She and Namine settled on “Pat.” I don’t know. My girls are weird sometimes. It’s up to me to establish normalcy in this family. My cross to bear, I guess.
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Role model: an essay
My sister wrote this essay, republished here with her permission.
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Sad trombone
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A new record
I worked from home today, which allowed me to get up with Namine and let Jessica sleep in. When I gave Namine her breakfast around 9:30, she asked me to first put her palatal prosthetic in. Wait, what? Yes, that’s right. She was so enthusiastic about it that she wanted to eat breakfast while wearing…
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She melts my heart.
Yesterday, as I was about to leave for work, I heard a small voice from one whom I had thought was asleep. “Daddy, don’t forget about me!”