decannulation

  • Happy no trache day

    Happy no trache day

    Seven years ago today, Namine was decannulated!

  • Pulmonary appointment

    Pulmonary appointment

    Namine met with her pulmonary doctor. We were met with unexpected good news.

  • For the better

    For the better

    I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today: A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?

  • Sick time

    Sick time

    Namine and I now apparently have what Jessica had last week. I thought that I had gotten the worst of it, but Namine woke up with a crouping cough this morning. Despite her being sick, though, she nearly always keeps it together and stays cheerful.

  • In love’s own words

    In love’s own words

    As Namine gets older, she gets ever more independent. But even as she grows, learns, and develops, the little things she says and does remind us that she is our little love. She is God’s gift to us, and we treasure her more each day.

  • Allergy test today

    Allergy test today

    Today Namine had an allergy test at the hospital, but as usual, we got a little more excitement than we bargained for. She threw up at the clinic, so I had to call my mom to bring some spare clothes. (Of course I was stuck at work, otherwise I would have done it myself.)

  • Remember, remember the fifteenth of September

    Remember, remember the fifteenth of September

    There are no gunpowder, treasons, or plots here. Just a little thing called decannulation. That’s right, kids. A year ago, Namine got rid of her trach, and her entire world changed.

  • The child who never was

    The child who never was

    I’ve seen quite a bit lately on Twitter about grieving your child’s special needs.

  • Ear surgery tomorrow

    Tomorrow we have to be at Children’s Hospital at 9:30 for surgery. Not that the surgery itself is that early; no, it will be about two hours later, around 11:00 or 11:30. Most of the day will be waiting on our part – waiting for them to come and take her back, waiting for the surgery to be done, waiting as Namine is in recovery. The ear surgery is not likely to be long, but they do still need to put Namine to sleep.

  • 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 – she’ll always be small – but she’s not small anymore. She doesn’t have a baby face anymore; she has a grown up face, so it seems to us. Can’t we have our baby back?

  • 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. As I was getting her out of her bath, drying her off and trying to get the all-too-hyper child into her pajamas, she said to me through shivers: “Haha, I ole!” (Papa, I’m cold!) Then she made a noise she’s never done intentionally: “Kuh!” I asked her if she was trying to say cold. “Uh huh. Kuh! Ole!” Even after some more practice with the hard C sound, she still separates the consonant from the rest of the word. But that’s okay. She only just learned to make the noise, after all.