A few years ago, Namine made up a song and sang it for us.

The three of us were on vacation with my aunt when Namine made up a song about “Haha and CR’s broken things.” I have no idea what we broke, or why Namine was singing about it. This video was taken in January 2013, and based on the time stamp, we must have been on our way home when Namine sang it to us.

After listening to Namine’s song, I want to talk a little about her speech.

Namine was born with a condition known as Pierre Robin Sequence, which, unlike her other birth defects, is not a single syndrome. Rather, it’s a sequence of anomalies (thus its name) which occur in utero, resulting in several conditions, which vary by individual: regressed jaw, cleft palate, and ankyloglossia (tongue-tied). Namine required a tracheostomy to breathe when she was a baby, and after several surgeries to expand her jaw and close her palate, she was able to get rid of the tracheostomy tube.

Our vacation to Williamsburg was at the point where Namine had finished with all that surgical work, but she was still tongue-tied. (She wouldn’t get her tongue clipped until 2014, and even then, it was only a partial clipping.) She was still receiving speech therapy, and they were working on enunciation, among other things.

In the video, you can hear that Namine’s “s” sounds are much more like “sh” sounds. That has since gone away, but not because of any surgery. The only procedure she’s had to correct her speech has been the tongue clipping — the rest were to improve her airway. The only reason her speech has improved (and it has improved a lot) is through hard work.

I’m usually pretty good about keeping the blog up to date, but for whatever reason, there are no entries whatsoever about our trip to Williamsburg, Virginia. I do have pictures though, so here are a bunch to prove it.