Day 17.

Thanks to everyone who sent words of encouragement yesterday… they all mean a lot.

Quick morning update:

Last night before bed we gave Jack a bath and he loved it… the last time we tried he didn’t.

Then he was a lot more relaxed, but still sometimes restless… the nurse ended up giving him some sleeping meds and I was able to go home around 9:30pm for some rest myself.

This morning has so far been a lot better. Jack had a massive poop (wondering if all that discomfort yesterday was related) and so we gave him a bath again and he clearly really likes it. His neck is able to straighten a lot more in the bath.

While I was getting him dressed I managed to get some smiles and giggles out of him and he’s now been napping on me for about 40.

Here’s to a new day!!


Evening update:

Overall a much better day than yesterday. Although he’s a little squirrelly now. He really wants to move and you can tell he can’t move the way he wants to. Lots of moving, kicking and grunting. Less spasms and tremors overall which is good too.

He’s taken two decent naps which I’m sure helps, along with a better sleep last night.

He doesn’t like when he’s fed through the nasal stomach tube, but we’re a ways off bottle feeding, so for now it’s the best option.

We’re told that now we might be able to transfer to the rehab facility tomorrow after all-  but Jack will be sharing a room with 3 other children so we won’t be able to stay overnight with him.

I look forward to see what this little lion can accomplish in one more week; when I look back at my update from last Friday I definitely feel like we’ve made great ground. Jack has a lotta work ahead of him.




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