I’m feeling emotional tonight. Maybe it’s the anticipation of mom arriving tomorrow. Maybe the fact that Jack has a cough which is what landed us in the hospital in the first place. Maybe the number of strangers who’ve reached out since “going public” with Jack’s story and having to go through those early days again. It’s definitely the reaching out I’ve done to other moms I’ve seen championing their kids with special needs on social media. And possibly it’s the red wine I’m drinking while Matt takes a turn at rehab. No matter the reason or the combination of reasons it’s not a bad feeling it’s just this overwhelming surge of two months worth of massive emotion in all senses of the word. Not to worry, I’m not sobbing on the couch or anything.
Jack is still not 100%. He still has a cough and it visibly affects his therapies. I think each therapist today commented that he seemed tired. Understandably as he was awake for an hour in the middle of the night and then still woke up at 5:30. But again his therapists were noting his improvements. Specifically him bringing his hands together more in the center of his body and reaching to grab something with both hands instead of one. I’ve actually noticed how he’s reaching more for things he wants- my sunglasses for example… hands off little man, those babies are new!- more like any one year-old would.
We had to take out his NG tube last night while he was sleeping because it got blocked by his vitamins. He was supposed to have it replaced in the morning but the nurse talked to the doctor and suggested we wait for today and see how he did without it. And he did pretty well. I asked Matt to stop for a new sippy cup on his way into town and it worked! Because the flow is much slower than using a normal cup I thought he might feel more comfortable drinking. Last time we tried he didn’t really suck so a sippy cup wouldn’t have worked. But Matt and I have noticed him sucking on his fingers a few times so we thought it was worth another shot. He likely will have to have the NG tube again over the coming days but we’re definitely getting closer to a permanent removal!
I’m really impressed with his cognition as well. It seems to have improved even in the last day or two. He seems to already understand much more than I expected and is now able to communicate that more as well, either by laughing, imitating us or choosing something we offer or just by generally being a goof. We see more of his personality coming back every day.
I’m so grateful for how determined he is. For all the smiles we get from him. For the daily improvements. And that Jack is who he is.
Tomorrow he is having another electrophysiological test. It’s really just another piece of the puzzle. It should tell us how well his brain is communicating with his musculoskeletal system. The results don’t really change anything from a therapeutic perspective, they’ll just give us a greater understanding of where he’s at.
A highlight of today was Jack waking up from his afternoon nap (we had to wake him up for therapy) to both Matt and I staring at him and giving us the biggest, sleepy grin.
3 thoughts on “Day 50.”
Judy and Brian
Oh my goodness I’d be surprised ised if you weren’t feeling emotional. We’ve been amazed at how strong you and Matt have been through all this. On paper anyway! And that little lion of yours is truly inspiring! Go Jacky go!
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Thanks guys, he truly is!
Incredible story of love and resiliency. Thanks for sharing, guys.
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