·  Normal is a dryer setting.

April 2011

Remembering the trach

Tonight, after Namine’s bath, she and I were in her room. I was just watching her play, but it’s such a pleasure for me. I love to see that she’s happy, and she loves having her room, a place all her own. She had to do her breather and take her medicine before play time, but she has never minded that.

A night in, and a video

Last night Jessica wasn’t feeling very well, so after dinner I turned off the lights in the living room so she could sleep on the couch, and played with Namine in her room. Actually, I turned off the lights before giving Namine her bath. I just love giving Namine a bath. It’s perfect for some just-me-and-Namine time, and of course she loves being able to play in the bathtub. I’ve used the time to work on Namine’s arm rotation (but don’t ever tell her that).

Getting the ball rolling

We made the call today to general surgery, in order to get things in motion for Namine to have her next two surgeries: g-tube removal and hernia repair. Unfortunately, we have thus far been a little successful, only having spoken to a receptionist. We’re in no real rush, but we would like this scheduled as soon as possible. Wisconsin summer is short; we don’t want Namine stuck in the hospital when fall hits, that much is certain.

Looking ahead

Getting back into the normal swing of things is pretty difficult. Yesterday afternoon Jessica asked Namine if she wanted to go out for ice cream, sure that the answer would be a resounding “yeah!” But to her surprise, Namine said no. “Why not?” Jessica asked. Namine responded, “Ha-ha! Eye meam!” She didn’t like that I wasn’t with them, and she didn’t want to get ice cream until I got off of work. When Jessica told me about this, I was touched.

A good Friday

We made it up here to Aunt CR’s house without incident, despite idiot drivers. (A pox on you, semi drivers. May your children have webbed feet!) It was crazy windy, though. Madness! But I digress. We had a wonderful evening here, with wonderful homemade potato soup and breadsticks. Namine ate two breadsticks, plus one of mine, and a whole bowl of soup. Then a Dora popsicle. Then a Vitamin Water. She’s asleep now, thank goodness. She certainly made it clear that she wanted none of that when I put her to bed.

A night without incident

Last night was calm and free of any falling out of bed, I am happy to say. Jessica and I decided to give Namine one more shot at sleeping in her big girl bed, so we added a lot of padding – both in pillows and blankets – to the middle guard rail. No longer can she slip between the rail and the mattress; since that was how she fell out last night, that is no longer a cause for worry. (Honestly, I didn’t think she could slip through the first time, but I was obviously wrong about that.)

Worth waiting for

At about 3:30 this afternoon, Namine was discharged from the ER. Thankfully, she does not have any broken bones. But in my opinion, we’ll only stay lucky for so long; her right leg is bruised, and we’re not sure how much it hurts her. She may have woken up crying this morning, but she doesn’t complain about pain. Ever. So you’d never know, now, what discomfort she might be in.

Falling out of bed

Namine fell out of bed again this morning. I try to never make the same mistake twice, however, so she fell onto a lot of pillows, which I’d stacked next to her bed, in case this happened again. She woke up and started crying when she hit the pillows, but she seemed to be just scared, not hurt. I brought her into our bedroom and laid her down between us, and she fell asleep again easily.

Moments worth celebrating

There’s a word that circulates the special needs community, that I come across now and again. That word is “inchstone” – as opposed to “milestone.” I think it’s appropriate, because developmentally delayed children, whether it is emotionally, physically, or mentally, have to work harder for typically smaller results. For example, because Namine has caudal regression, she had to undergo foot surgery before we could even think about her bearing weight on her legs at all, to say nothing of actually standing or walking.

The pleasure of eating

I woke up this morning with a headache. Usually, that’s neither here nor there, because I always wake up with a headache. But it’s usually a small one, and it’s usually gone by mid-morning. But this one was a doozy, and it was because I had a nightmare. Nearly all of my nightmares have to do with Jessica or Namine – or both. (This is no surprise to Jessica. As my best friend, she hears my hopes, my fears – and my darkest dreams.) The dreams almost always have to do with the hell we’ve already been through. This time, I dreamed that Namine’s palate had reopened, forming a massive, bloody crater in her mouth. I woke up in a sweat, unable to tell for a moment what was real and what wasn’t.

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