stoma

  • Understanding skin physiology

    Understanding your child’s physiology – special needs or not – is crucial to understanding not only their current condition, but what might affect changes in them as well.

  • Coincidence or providence?

    Instead of doing one of those “year in review” posts, I’m going to talk about something else.

  • 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.

  • Getting her stitches out

    Yesterday Namine had an appointment with ENT to get the stitches in her neck removed. Jess took her to the clinic building, not the hospital. Namine is old enough that we can tell her what’s going on; sometimes she handles it well, and sometimes not. Well, this was a not day. I think the recent business with her feet has made her more afraid of doctors.

  • Coming home tonight

    Namine is being discharged from the hospital this evening. Much has happened since the last post, not the least of which is the foot surgery schedule change.

  • Foot surgery: two down

    I’m going to try to keep this short, because I’m typing this from my phone. Anyway, Namine’s foot surgery is done, and seems to have gone well. I don’t actually know what all was done, because I haven’t had the chance to speak with any ortho docs. Both of Namine’s feet (especially the left) appear […]

  • Back home from the hospital

    Namine came home from the hospital today. Much has happened, most of which I’ve already talked about – her stoma closure, her foot surgery, and the upcoming re-casting. And now we’ve got even more: g-tube removal!

  • Uncertainty

    The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal regression, you can find the medical information you need easily enough – thank you, Internet – but finding other parents who’ve taken care of an afflicted child is not difficult, it’s nigh impossible.

  • Foot surgery today: post-op

    Namine came out of surgery at 3:30, but of course spending time with her is more important. I’m heating up some dinner in the parents’ lounge now, so I should have enough time to give you all an update.

  • Foot surgery today: stoma closed!

    Procedure one of two, the closure and suturing of Namine’s tracheostoma stoma, is complete. Now, onto the orthopedic procedure, fixing her club feet.

  • Foot surgery today: pre-op

    Well kids, we’re here at the hospital. As usual, expect several posts today, as I’ll make a post after each update from the nurse.

  • 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.