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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Reacting to negativity
A question was asked on the Pierre Robin Sequence board: As a parent to a special needs child, do you get offended when people ask “whats wrong” when they see a trach or something out of the norm with your child? how do you react to the question?
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Throwback Friday
Yesterday Namine asked me if I could show her some videos of her when she was a baby. Here’s a couple that she really likes.
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A case for choosing life
Jessica and I have been to the hospital more times than we care to consider. All that has come with great cost, but great benefit too. I’d like to impart something. Not wisdom — I wouldn’t assume that much hubris; but at least experience, and perhaps understanding.
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The most inspiring thing
I asked Namine a serious question. I was not prepared for her answer.
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Dental clinic
With all the craziness lately, I never wrote about Namine’s most recent trip to the dentist last month. Some pretty important points were discussed.
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IEP season
As the year goes on, I am beginning to see news about IEPs from many of the special needs folks whom I follow on various social networks. I do not envy them.
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The way things are
At the mall yesterday, Namine gave us a lesson in acceptance.
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Namine’s wish
We found out not too long ago that Namine qualifies for Make A Wish.
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Betty Brinn museum
Variety, the children’s charity group, had an outing the other night.
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#triggered
Thanks to Tumblr and its so-called “social justice warriors,” the notion of having an emotional trigger is diluted somewhat. But as I found out firsthand, sometimes it’s real.
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Smoothie time!
We picked up a little blender the other day. It brought back some bittersweet memories, and we created some new ones.
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2014 in review
I started out the year writing about Wolff’s Law. It seems fitting now, seeing how Namine has grown, and continues to grow — despite the assurances of doctors.