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.

The day Namine was born

I’m too stunned. Events are happening too fast for me to react. It’s July 15, 2008. I have no idea what time it is. I’ve brought my wife into the hospital because labor has started; the day is finally here – our daughter is being born. I’m sitting here, waiting for a nurse to come get me. They already took my love back there, wherever “there” is, to operate. To start the c-section, in an attempt to save our daughter’s life. She’s too early; she’s breach; she’ll die soon if they don’t do something, and fast. I’m dressed in street clothes, with a paper gown over them. I’m warm, too warm. My mind keeps going to dark places – what if what if what if – and I try to distract myself. I focus on the paper booties they gave me to wear over my shoes, my hot, panicked breath blown back in my face by the mask over my face. The baptismal cup in my hands. Will I be able to baptize her? Will she die before I get the chance? I’m scared. I’m scared for my wife. I’m scared for our unborn daughter. I remember too well the promises made: never be able to walk. Maybe not able to breathe. Need heart surgery immediately. Death almost guaranteed. Don’t get your hopes up. Dead within a month. Dead within a week. Options for denying support. Screw that, I think. As long as she can be kept alive, she’ll be given every chance I can give. The nurse bursts in, interrupting my thoughts. She doesn’t need to speak; I know she’s here to take me back.

A successful potty time

In all the excitement of Namine’s fever and trips to the doctor and hospital, I forgot to tell you about this: Namine went on the potty a couple days ago. It was pretty momentous, even if, so far, it’s only a single occurrence. But the fact that it happened at all – and how it happened – may, just may, indicate something much larger. Possibly something yet again doctor-defying, even.

High fever and a trip to the ER

Last night Namine had an incredible fever of 103.2. That was under the armpit, too, and we thought that was much too high for what the doctor had called just that afternoon “the tail end of a virus.” To us, it seemed like she was coming down with something else entirely. So we bundled up Namine and headed to the ER – me, Jessica, Namine, and my Aunt CR, who was visiting for the evening. I doubt it was as relaxing as she’d hoped the evening would be.

…It’s another

So Jessica took Namine to the pediatrician this afternoon. According to the doctor, Namine’s fever is the result of a virus. Again. I tell ya, the kid can’t get a break. As a result of the high fever, she doesn’t have much of an appetite. She’s crabby. She’s tired. It’s up to us to make sure she’s well-hydrated. Normally that wouldn’t be a problem; Namine loves water. Loves it. But when she’s feeling so ill, of course she wants nothing to do with anything. Except perhaps Elmo.