• Virtual speech at the medical college

    Virtual speech at the medical college

    Jessica, Namine, and I were asked to speak once again to the Medical College of Wisconsin about equipment, accessibility, and patient support.

  • Mindfulness and medication

    Mindfulness and medication

    Sometimes we need help remembering the “why,” and that’s okay.

  • Virtual speech at the medical college

    Virtual speech at the medical college

    Jessica, Namine, and I were asked back to the Medical College of Wisconsin to give our annual talk on equipment and accessibility.

  • Doc block

    Doc block

    We had to go to the hospital so the pharmacy could refill Namine’s medication.

  • One less med

    One less med

    Last week Namine had a cardiology appointment. It was just a routine check up.

  • Trip to the doctor

    Trip to the doctor

    Over the weekend, I took Namine in to the doctor. She had woken up with a barking cough and quite a lot of boogers, which tends to happen as soon as it gets cold.

  • Drawing her own medicine

    Drawing her own medicine

    Namine has shown an interest lately in drawing her own medicine. She’s always taken her medicine seriously (pun intended), mostly because we’ve always been honest with her from the start about why she has to take so much medicine at all. (And to be frank, she doesn’t have nearly as much medicine as she used to.)

  • Self-sufficiency


    Namine wants to be independent, so we’ve done some things to enable her around the house.

  • Cardiology appointment

    Cardiology appointment

    Nearly a year after completing the Fontan, Namine’s doctor cut back her medication as a response to her healthy heart.

  • Back to school

    Back to school

    Today is the second full day that Namine is completely off her pain medication, with no trace of pain — abdominal or otherwise.* As her health has improved, we’ve been able to resume her schooling. She’s very excited to be learning again.

  • To the doctor, again

    To the doctor, again

    We took Namine to the pediatrician. Yes, again. She still has a nasty-sounding cough — even after being on steroids to help with inflammation, antibiotic, increased inhalers, and a nebulizer — and the persistent bugger shows no sign of letting up.

  • Out for a Monday drive

    Out for a Monday drive

    On my lunch break today I drove out to the medical supply store to pick up a nebulizer kit for Namine. This is the sad story of why I came back empty-handed, and more!