Fighting infection

Yesterday afternoon, Jessica and I took Namine in to see the pediatrician. The particular doctor we saw had never met Namine before, but she seemed well enough acquainted with her file. (It’s about a foot thick. No surprise there, with everything she’s been through.) She listened to Namine’s heart and lungs, hooked her up to a pulseox (heart rate: 130-140, O2: 90-91), checked her ear tubes, and looked in her nose and mouth. Namine was, as always, well behaved and cooperative for the doctor.

Keep on rolling

Jessica and I will be taking Namine to the pediatrician this afternoon. Last night, she threw up a bunch of mucus, and she started to get really congested as we got closer to bedtime. Namine didn’t actually go to sleep until around midnight, and it was a fitful sleep at best. Laying there on the flat mattress, she was breathing very loudly as she slept. She didn’t seem to have any repiratory distress – that is, she wasn’t struggling to move air – rather, she was just breathing around a whole lot of boogers.

Progress at PT

So yesterday Namine had physical therapy. It was (we thought) just another day where Namine fights with her therapist. (There are two therapists, actually. One is an American woman, and the other is a British man. She always refuses to work for the woman, but the man she just adores. We suspect it’s the accent.) Anyway, at therapy yesterday, the woman was working with Namine.

Love’s own reason

Perhaps you’ve heard; perhaps not. The divorce rate for special needs parents, according to word of mouth, is 85%. I’ve also heard 82%. Upon doing some research, though, it’s hard to know where this statistic came from, or exactly how old it is. (With the assumption that the divorce rate goes up each year, that percentage might be higher.) I can’t say that no one knows where this statistic originated, because I haven’t talked to everyone. But on average, it seems to be accepted. People – especially people who care for those with special needs – hear this and nod. Yes, they say, I believe that.

What does hair mean to you?

Another day, another therapy session. There’s not much going on, aside from the usual. Namine is trying to eat us out of house and home, as usual – and she’s not even three yet! What’s going to happen when she’s a teen? But I digress. Having nothing out of the ordinary on my mind, today’s post is instead a philosophical one: what does hair mean to you?

Amazing from the ordinary

Jessica, Namine and I went to a running store yesterday. Jessica needed a pair of shoes with good arch support, physical therapist’s orders. And the shoes with the best arch support are running (or sports in general) shoes. My dad came along to give advice on which kind would be best. I wasn’t needed; only my wallet was. Running shoes are ‘spensive, I tell ya. But I digress. I was sitting on one of the chairs holding Namine, when she said “More!”

Preliminary IEP

This morning was Namine’s pre-IEP IEP. They called it the “preliminary IEP” – more like preliminary waste of time. We talked, we exchanged information, but no real decisions were made. We decided to make decisions, though. Does that count? After the meeting was said and done, nothing was committed. We signed a form or two, agreed to tour the school where Namine will be going (thankfully it’s nearby and wheelchair accessible), and I think that’s pretty much it.

Difficulty speaking

Namine speaks in nearly all vowels. For whatever reason, she doesn’t make any plosive sounds. That is, B/D/P/T kind of sounds. She can make Ms, Ns (okay, with a little more difficulty), and Ls. But plosives, she can only seem to make when she plugs her nose. Speech therapy was concerned that it wasn’t just that she wasn’t making those sounds; they thought that perhaps she is incapable of making them. Remember, she’s had a lot of work done on her jaw – the mandibular distraction and the cleft palate repair. (Yeah, it doesn’t sound like a lot. Trust me. It was.) So yesterday Jessica and Namine went to see Dr. Denny, the plastic surgeon who did Namine’s jaw and palate work, to see what he thinks.

Joint concerns

Joint problems are really not something you think about with a two year old. But caudal regression has a greater impact than you’d think. It’s not just her lower body that it affects – that is, her hips, legs and feet – but joints, internal organs, and possibly even skeletal density.

Mip meam

The other night, I split a bowl of ice cream with Namine. I topped it with Cool Whip, which she’d been asking for. She’d been asking for “mip meam” (whipped cream) for several days, actually, and I by a stroke of luck I remembered this when I ran to the store the other day to pick up some more ice. Anyway, here is a short video of her ejoying (read: hogging) the whipped cream. Of course, when the mip meam was all gone, it was left to me to eat the ice cream. She wanted nothing to do with it.