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  • Smoothie time!

    Smoothie time!

    We picked up a little blender the other day. It brought back some bittersweet memories, and we created some new ones.

  • Keep your chin up

    Keep your chin up

    September 5 is Pierre Robin Sequence (PRS) Awareness Day!

  • Rug burns are awesome

    Rug burns are awesome

    Physical therapy has always been a part of Namine’s life, and it always will be. She has to work harder to do things that just come naturally to other children.

  • GI and pre-op

    GI and pre-op

    We spent nearly three hours in the hospital today. Thankfully, though, this was not a reactive visit – nothing was wrong that sent us rushing in. No, the clinic appointments today were twofold: to once again establish a gastoenterologist for Namine, and to make sure she’s healthy enough to have some procedures done next week.

  • Urology appointment

    Urology appointment

    We met today with Dr. Mesrobian, Namine’s urologist, to discuss the results of the tests done a while back. We had a pretty decent idea of what to expect coming into the meeting. I’ll be frank here: we’re talking about potty training here, so if you don’t want to hear the potty talk, don’t click the link.

  • Weight gain and loss

    Weight gain and loss

    Do you remember those days – it seems so long ago – when we were told by GI doctors that Namine was not gaining weight, and that she’d have her g-tube until the third grade?

  • Things fall apart

    Things fall apart

    I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core.

  • 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.

  • Therapy and school

    This morning a physical therapist came to the apartment to evaluate Namine. But this was no ordinary PT – if there is such a thing – this was a PT from the school district. She was there to examine Namine in order to determine what kind of therapy she might need when she starts attending school. Things like her preferred method of locomotion, level of toilet training, gross and fine motor skills, listening skills, and cognitive ability.

  • 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?

  • 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 going to talk about something uncomfortable. If you get offended, I’m sorry, but it must be said. I only ask that if you keep on reading, hear me out and give it some thought.