Update

For the next 4 weeks or so, Sam has one of my favorite docs. He’s head of the group though, so he’s really busy and not there as often. But he’s so thorough, really gets down to the root of any issues, works them from all angles. Love that about him. And he’s from my hometown. Small world.

Sam had a more thorough genetic panel run a while ago and the results finally came back. Everything was mostly normal, but there were two small anomalies.  Sam’s doctor wasn’t sure what they meant really — he was going to meet with the geneticist. They weren’t major markers for anything, but they were different. We think we may get the same panel run on ourselves, and even Sebastien, to figure out if it’s inherited, if the changes happened in utero, or what they mean really.

Sam’s still doing well right now:  platelets in the normal region; conjugated bili levels are significantly dropping (he’s much less oompa loompa-ish; doing well on CPAP. His CRP is creeping up though. This doesn’t mean there’s an infection yet, just a sign of slight inflammation (he’s at a 2 right now, but he’s been up as high as 20).  Whether the inflammation is from the feeds, we don’t know yet. But they’re going to watch things closely.  He’s also been a lot more alert recently, which I love.

Because he’s been stable, the physical therapists have been able to work with him finally. His movement is pretty good so far.

Sebastien’s still doing well. His doctor said that he should be coming home tomorrow. They think his desat the other day was caused by them switching to pure breastmilk. He’s been getting HMF breastmilk, which changes the consistency slightly. Since then he’s been fine. Am I ready for him to be home? Um, sure? I kid, of course I am!

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