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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Happy birthday Namine!
Namine turns 2 today! She’s come so far in such a short time, but it doesn’t feel like a short time. We’ve been through so much, and she’s just as strong, if not stronger. Judging by how sassy she is lately, she is definitely 2. I think she’s most likely eat more cake this time…
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In step with orthopedics
I would have liked a little more notice than this, perhaps, but it’s still nice to know ortho hasn’t completely forgotten about us. We got a call last week saying they wanted to do Namine’s foot surgery (feet surgery? It does encompass both feet) this month, on the 23rd. I guess the opening just became…
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From vacation to decannulation
It’s always hard to get back into the swing of the daily routine after a vacation, even a small one like a 3-day weekend. (Of course, the nature of Namine’s condition and medication needs still require a semblance of routine, even on vacation. But it was still nice to relax and to be able to…
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Namine’s trach/vent clinic visit
Today is the last day that Namine has to wear arm restraints! Yay! Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we…
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Namine’s office visit
After picking Jessica and Namine up from the clinic visit at the hospital, we stopped by my office, which happens to be just down the road. I don’t remember if we’ve ever taken Namine into my work to play show-and-tell before, but if we have, it was a long time ago. So either way, it…
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Namine’s palate is okay
Namine had her clinic visit with her plastic surgeon this morning. Nothing but good news: her palate has no damage, and is healing nicely. More later!
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Rummage sale!
You know, all too often we focus on the bad and forget about the good. So I end up posting when Namine has surgery, or is sick, or something goes wrong. But the point of her blog is not just to document and communicate her problems and issues, but also to tell people about how…
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Namine’s palate
It just rolls off the tongue: “Namine’s cleft palate.” For nearly two years, it’s been that way. So whenever I say it or type it, it’s still those three words. But no longer! It’s been a week since her palate, no longer cleft, has been repaired.
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Post-coming-home thoughts
Now that we’re home, I think we can breathe a little easier. I fed Namine some applesauce and pureed bananas (neither of which she ate much), but I think that after being used to feeding herself, it’s somewhat frustrating to be fed by someone else again. We are willing to remove her arm restraints while…
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Going home!
Kids, it’s official. They discharged Namine this morning, and now we’re going home! Nothing has really changed, as far as Namine’s condition. We’ll keep you posted on how she’s doing.
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Sleep, perchance to dream
Namine is asleep, at last. Since we’re here in the hospital, and she’s feeling so crappy, we have temporarily suspended our rule that Namine is to nap no later than 5, maybe 6 in the evening.
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The path to recovery
Namine is asleep, so I think now is as good a time as any to update everyone on how she’s doing. The hardest thing a parent has to do, I think, is sit and watch their child in sickness, knowing they can do little to lessen the pain, and nothing at all to improve their…