Afternoon update:

I’m not sure I’ve clearly articulated how much work each day is with Jack since last Thursday. With the exception of when he naps (if he naps well) it’s very difficult to keep him happy. My intuition is that he is mostly frustrated because he wants to move and can’t. It takes a lot of energy and constant moving, singing, distracting in order to prevent him from being whiny, squirmy and frustrated. I so wish he would be happy in the carrier, or that we could give him a soother or any of the normal things you do to help soothe a baby. And while he will initially calm down while we hold him, it won’t last more than a minute or two before he is trying to move and can’t again.

Physio this morning went a lot better than yesterday, with our help. we danced around, sang and played peek-a-boo to try and distract him while she worked. She also gave us a few pointers to try and help him rediscover his own hands again because he hasn’t been putting them together or bringing them to his mouth or anything yet.

Unfortunately his occupational therapy was ok, but not much better than Physio yesterday. The therapist seems great but she won’t be the one teaching him how to eat again and we won’t be able to see that one until next week!! Which again feels like this kind of hurry up and wait scenario. We’ll continue to work on small things with him with his mouth and soother, but we’re not supposed to work with food so we don’t create any aversions or risk him swallowing something into his lungs.

Jack has been fighting sleep and had only cat naps all day, but we’ve managed to play lots of little silly games and get some smiles out of him. Matt and I decided that we’re going to try and limit talking about his health in front of him unless we’re actively working on something. I think some normalcy and working on managing our stress when we’re with him can only have a positive effect.

Matt’s going to spend the night here tonight so I can take a break, go see Rog and have a glass of wine!!!(obviously no alcohol is allowed on campus).

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Evening follow-up in response to my sister:

Thanks Jen, xo! A great reminder for me to be patient is looking back at an update from a week prior.

Last week I was still writing about Matt dancing with him for 5 minutes and while his attention span is shooort right now, I can clearly see the gains we’ve made since then with his neck strength and alertness- even if that brings frustration with it.

And with all our goofiness and dancing around we do manage to get a decent amount of smiles out of him which keeps us going.