October 2010

  • Discontent

    I was our understanding that Namine would have her casts replaced – it’s not accurate to call them surgeries anymore – every Monday. This past week, the appointment was at 1:00, so we figured it would be every Monday at 1:00. We also figured that ortho would follow up with us, as they said they would, prior to Friday (today). We should have known better.

  • Who told her what Band-Aids are for?

    Jessica and I were in the other room, preparing our joint Halloween effort for tomorrow. (Don’t worry, I’ll post some pictures tomorrow. You’ve been warned.) Namine was in the living room, playing contentedly. In the corner of the living room, on the lowest shelf on one of the bookshelves, we keep a couple boxes of […]

  • Coming down with something

    Namine was coughing quite a bit after she woke up, so we took her to the doctor this morning. Two nights ago, she was coughing a bit before she fell into a deeper sleep. Last night, however, she didn’t cough at all. I had hoped that whatever had been giving her the sniffles had passed. Apparently, that is not the case.

  • My little sweetheart

    The other day, I came home from work with a migraine. Namine was playing nicely on the floor, and Jessica was relaxing on the couch. After giving my two loves hugs and kisses, I hung up my jacket and laid down on the floor next to Namine.

  • Night thoughts

    I was reading something earlier about how parents with special needs children can hold back their kids’ education/development/what-have-you. One of the majors ways this happens is when the parents focus more on the disability than on the child.

  • 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 […]

  • More surgery tomorrow

    Namine goes back into the hospital tomorrow to have her casts redone. These things are never enjoyable. We can only hope that she’ll only be in the hospital for one night.

  • Casts, complications, and caudal regression

    Namine is making progress. She is still in pain, but seems to be dealing with it a little better. That, and we have a better idea of when the meds start to wear off, and we can sort of anticipate when she’ll need her next dose. Namine is starting to learn to move around again.

  • 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!

  • Comforts of the familiar

    Namine is doing slightly better today. She’s still in pain, yes, but she’s showing more of herself, in spite of being groggy from the morphine. She gave kisses today at lunch, and signed “I love you” to me, Jessica, and other family members.

  • 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.