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.

  • Ear surgery tomorrow

    Tomorrow we have to be at Children’s Hospital at 9:30 for surgery.

  • What could never be

    Sometimes we find ourselves pining for something lost, perhaps for something that never even was. It sneaks up on us, Jessica and I, and suddenly we realize that Namine is almost three years old. She is moving, she talking, she is more independent every day. Where is our little baby girl? She’s still small -…

  • Looking the other way

    I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m…

  • A long day of clinics

    As I’ve mentioned before, long clinic-filled days are nothing new to us. Nothing new, no, but that shouldn’t suggest that we enjoy them.

  • Clinic tomorrow

    As if last week was not bad enough with all its clinic visits, we have one more this week, midst all of Namine’s resumed therapy sessions. But while last week’s clinics were mere one- to two-hour deals, tomorrow’s is promised to be at least four hours long. A four-hour clinic visit is nothing new to…

  • The best reason

    One of my favorite phrases since becoming a special needs parent (though we don’t think of ourselves like that; we’re just parents taking care of our baby girl) is “I’m not an expert, but I play one in real life.” I’m not sure where I picked it up. Regardless, I love this saying because for…

  • Happy Mother’s Day

    This post could easily be called “a look at our nearly three years of parenthood.” I know some moms who would not share this day with their husbands for their life, but thankfully Jessica is not like that. We both feel that we would not be as good separate. We would not be complete.

  • Inchstones to you, milestones to me

    Namine made progress in speech last night.

  • Remembering the trach

    Tonight, after Namine’s bath, she and I were in her room. I was just watching her play, but it’s such a pleasure for me. I love to see that she’s happy, and she loves having her room, a place all her own. She had to do her breather and take her medicine before play time,…

  • The pleasure of eating

    I woke up this morning with a headache. Usually, that’s neither here nor there, because I always wake up with a headache. But it’s usually a small one, and it’s usually gone by mid-morning. But this one was a doozy, and it was because I had a nightmare. Nearly all of my nightmares have to…

  • Still sick

    After therapy this afternoon, Jessica is going to take Namine to the pediatrician.

  • Embracing the storm

    I actually meant to talk about this the other day. On Sunday night we had a crazy, windy, loud thunderstorm, and Namine could not sleep.