Eiche fam

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.

  • National Special Needs Parents Day? No way.

    Ellen from Love That Max brought to my attention that Congress is considering a National Special Needs Parents Day. My initial reaction is a seething rage. It feels patronizing. It feels like pity. It feels like the government is saying, “Oh, sorry you got stuck with that kid. You know, the one with the problems.”…

  • I love my daughter’s neck

    You might take one look at that title and say Paul, my good man, you have gone off the deep end. But bear with me. And a fair warning: there is no merit or information to this post. It’s just me, talking about my beautiful daughter.

  • Appointments today

    Namine had to get blood drawn and then pay a visit to the endocrine clinic today. I think it’s safe to say that she knows the hospital, and she thinks that it usually means pain. (I wonder where she got that idea.) I suspect she’ll sleep well at nap time.

  • Giving thanks

    Currently on this Thanksgiving Day, my two loves are napping. We all ate a lot at Jessica’s sister’s house, and are sufficiently full. I can’t nap – I get a migraine if I do. (As it is, I wake up every day with a headache. But enough of that. You’re here to read about Namine,…

  • Like second nature

    I had an interesting thing happen to me on Friday. Of course I didn’t get to talk about it because more important things happened. But Namine is doing better now, so I can bring it up. Anyway, this reminded me how being the parent of a special needs child has changed me. It has shaped…

  • Twubblesome twos

    Yesterday Namine was probably the first time Namine was really naughty for Jessica. It doesn’t really come as much of a surprise; she is two, and she is in almost constant pain because of her legs and feet. She’s been an angel to have behaved as well as she has, in my personal opinion. Not…

  • On boundaries

    One of the people I follow on Twitter posted yesterday posted (and I’m more or less paraphrasing, since I can’t find at the moment the original tweet), “a child without boundaries is a child with much stress.” I’d like to chime in here.

  • Reconsiderations

    Namine continues to amaze us. After a recasting experience that can only be described as traumatic, she recovered quickly and easily. So much so that Jessica and I are forced to reconsider what we previously thought was an easy decision.

  • Trach/vent clinic, then recasting

    I’m sitting here at the hospital waiting for the valet to bring my car back, so I figure I’ll start tonight’s post. I really don’t like making longer posts from my phone, but it’s either this or keep hitting “refresh” in TweetDeck.

  • Looking ahead to surgery

    Since we switched out Namine’s stoma gauze for Mepilex, she’s been almost completely free of coughing. Score one for the thinking parent. Pretty soon, though, she won’t need anything to cover her stoma, because she won’t have a stoma to cover.

  • Stoma care: using Mepilex instead of gauze

    The question of keeping Namine’s tracheostomy stoma covered was raised in my mind. Since decannulation, we’ve kept it covered with gauze. It seems like she’s coughing when she has the gauze on, but when we take it off, she doesn’t cough as much or at all. So I called the ENT department at Children’s Hospital…

  • A good night

    Last night, Namine slept through her third trach-less, no-help-from-oxygen night, ever.