Pierre Robin Sequence
Pierre Robin (pronounced “Roban”) Sequence or Syndrome (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.
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Chest x-ray results
What the title says. Unfortunately, “Namine is not sick anymore” is not part of it. We’re still fighting whatever she has – whatever is giving the raspiness in her chest. On the plus side, though, Dr. Gordon is back in town and we got the okay to bring Namine in for a chest x-ray. Thanks…
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By any other name
Today Jessica and I took Namine to her genetics appointment. It wasn’t so much for her benefit, however, as it was for ours, as her caregivers and advocates.
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Love’s own reason
Perhaps you’ve heard; perhaps not. The divorce rate for special needs parents, according to word of mouth, is 85%. I’ve also heard 82%. Upon doing some research, though, it’s hard to know where this statistic came from, or exactly how old it is. (With the assumption that the divorce rate goes up each year, that…
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What does hair mean to you?
Another day, another therapy session. There’s not much going on, aside from the usual. Namine is trying to eat us out of house and home, as usual – and she’s not even three yet! What’s going to happen when she’s a teen? But I digress. Having nothing out of the ordinary on my mind, today’s…
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Preliminary IEP
This morning was Namine’s pre-IEP IEP. They called it the “preliminary IEP” – more like preliminary waste of time. We talked, we exchanged information, but no real decisions were made. We decided to make decisions, though. Does that count? After the meeting was said and done, nothing was committed. We signed a form or two,…
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Difficulty speaking
Namine speaks in nearly all vowels. For whatever reason, she doesn’t make any plosive sounds. That is, B/D/P/T kind of sounds. She can make Ms, Ns (okay, with a little more difficulty), and Ls. But plosives, she can only seem to make when she plugs her nose. Speech therapy was concerned that it wasn’t just…
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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.
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Parenting is an ad-lib
This is especially true for raising a special needs child.
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Taking a deep breath
Of all the things that we fear above all else, as parents of a post-trach child, is respiratory illness.
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An apple a day
It’s been an almost immeasurably long time since Namine had last had an apple. It’s not that she doesn’t like them; far from it, she loves apples. But she couldn’t eat them, for fear of choking. The skin, especially, posed a problem. But before Namine’s cleft palate was repaired, she could not eat very much.…
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Understanding skin physiology
Understanding your child’s physiology – special needs or not – is crucial to understanding not only their current condition, but what might affect changes in them as well.
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Coincidence or providence?
Instead of doing one of those “year in review” posts, I’m going to talk about something else.