·  Normal is a dryer setting.


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?

Twubblesome twos

Yesterday Namine was probably the first time Namine was really naughty for Jessica. It doesn’t really come as much of a surprise; she is two, and she is in almost constant pain because of her legs and feet. She’s been an angel to have behaved as well as she has, in my personal opinion. Not that any of that really makes a difference when you’re in the middle of a tantrum.

Sitting up by herself

I had the opportunity to see Namine sit herself up all by herself last night. It may have had something to do with her being full of pizza and ice cream. Namine and I have a couple things we like to do every night. One of them is share an ice cream sandwich after dinner, and another is sing. I have a few songs I like to sing to her every night. About halfway through the songs, she’ll lay her head down on my shoulder, and I’ll lay her in bed. She usually falls asleep pretty quickly after that. Oh no, not last night.

Stoma care: using Mepilex instead of gauze

The question of keeping Namine’s tracheostomy stoma covered was raised in my mind. Since decannulation, we’ve kept it covered with gauze. It seems like she’s coughing when she has the gauze on, but when we take it off, she doesn’t cough as much or at all. So I called the ENT department at Children’s Hospital around 2:00 this afternoon. I got a return call at 5:00. I guess that’s about par for the course.

Health update

In case you were wondering, Namine hates shots. The other day, she got her Synagis shot (for RSV) – and at least one other, I’m pretty sure – but there was too much to give in one go. So even though the dosage was for a single shot, they gave her one in each leg….

Distracting Namine

Namine had a doctor’s appointment earlier this week. We took her in to see Dr. Denny, her plastic surgeon, who looked at her jaw and distractors; he said she’s doing better than he expected. (We get that a lot.) He told us to keep on with the distracting process through Sunday, then to bring her…

Back to top