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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You can’t stop the playdate train
Namine’s friend Norah is her total opposite. Namine is content to sit in one spot for long periods of time. Norah, on the other hand, is constantly go go go — which is quite a switch for us.
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Tackling the big issues
Daddy, can I sleep in just my underwear tonight? I knew the question was coming soon. Namine has, for nearly a week now, spent her days in underwear – yes, that’s right, no diaper. Her mind is ready to be rid of the diaper, even if her body is not.
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To the doctor, again
We took Namine to the pediatrician. Yes, again.
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Rug burns are awesome
Physical therapy has always been a part of Namine’s life, and it always will be. She has to work harder to do things that just come naturally to other children.
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Out for a Monday drive
On my lunch break today I drove out to the medical supply store to pick up a nebulizer kit for Namine. This is the sad story of why I came back empty-handed, and more!
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Potty training
Potty training is hard to nail down in the best of circumstances. But add to the normal stress between parent and child the possibility – nay, the likelihood – that said child might not be able to have sufficient bladder control at all, well, things might get interesting. Then again, everybody involved might just learn…
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Deep breaths
Namine had a pulmonology appointment today. Getting the appointment set was stressful enough, to say nothing of the fact that we needed to make sure Namine’s lungs were okay. There’s no reason for alarm, though; Namine is fine, and the doctor was content with increasing her inhaler dose and prescribing an anti-inflammatory. Getting to this…
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Lies, damned lies, and IEPs
We thought we were past the lunacy of IEPs. We were wrong.
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Namine on her Radio Flyer bike
Just last week Namine couldn’t even move while on her Radio Flyer bike. No longer — she straps it on and gets it done.
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This girl is hardcore.
Namine pulled her loose tooth out. No, it wasn’t ready to fall out yet. She just decided it was time to go, and yanked it.
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On advocacy
Who should speak for the disability community? Sometimes I think I don’t give enough conscious thought to advocacy – or to be more precise, self-advocacy. Namine is, after all, only five. But she’s growing up fast (too fast for this parent, that’s for sure), and she must be able to speak about herself on her…
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Sick this morning
We had a busy day weekend. We saw Frozen (this being Namine’s third time and my first) and we cleaned the apartment. Well, most of it. This morning, I don’t know if Namine is paying for being out in the cold, but she woke up with a croupy cough.