I am alone. My best friend, whom I am fortunate enough to have married, is asleep, perhaps dreaming of punching a gastroenterologist in the face. My little love is asleep, oxygenation high enough to justify leaving the mask off for the night. I alone am awake, thinking thoughts known only to me and God, though surely I am the only one who cares. I’m sure most of the normies have gone to bed as well.

I’m thinking about work, and how I probably should have gone to bed at 10, maybe earlier. I have an early day tomorrow, after all. But I’m still up, thinking about Namine, the day’s clinic visit, and her stupid GI doctor. Thinking about the clinic visit next Thursday, and how different I hope it will be. (I’m sure it will be; Dr. Gordon is a whole different doctor – he actually cares about Namine, not her chart.) Thinking about the impending foot surgery, recovery, and all that entails. And thinking about the new thing Namine did tonight.

It was a long time before Namine fell asleep. Jessica thought her lips looked a little on the blue side when I was about to put her to bed, so I put the oxygen mask on her. I should have put the pulseox on her first, but I didn’t, so I don’t know what her sats were beforehand. But afterward, they settled at a nice steady 91. Namine was a little fidgity and a lot vocal, so I laid down in the bed. (Not her bed; Namine’s crib is in our bedroom.) I fell asleep, but Namine didn’t. I heard her call me, and I sat up. She was sitting up, too. I looked at her for a moment. Then it hit me: Namine sat herself up in her crib.

In all of Namine’s increased strength and abilities from therapy, there are two things she is as of right now unable to do by herself: roll over completely (due to the caudal regression and its effect on her hips and legs) and sit herself up from laying down on her back. So Namine is effectively immobilized if you lay her on her back, because she can’t roll over onto her stomach, from which she can sit up; and because she can’t sit herself up. Correction: couldn’t sit herself up.

It’s a whole new world.

Husband. Daddy. Programmer. Artist. I'm not an expert, I just play one in real life.


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