Day 36.

Evening update:

Jack had another turnaround day.

I woke up this morning feeling pretty down and just really missing my happy little boy. Jack didn’t sleep very well last night and was pretty cranky this morning.

But after a nap he had a great physio session with Matt I’m told. Worked hard and they spent a lot of time focusing on gross motor movements to help him learn to roll over again as well as some fun stuff like knocking cars down a ramp while in tummy time.

Then for the rest of the day Jack was mostly a happy camper. Continuing to eat well, and to reach and grasp for things.

The biggest change we saw today was how “talkative” he was. He’s really found his voice haha. They’re all just vocalizations so far, no verbalizing but it’s sounding more like his voice- less high pitched- and he’s talking often and loudly (just like Jack) and not only when he’s upset about something.

He really loved Lauren’s dance moves today, and again the sandbox and riding the swing with Matt.

I had an afternoon nap while Lauren and Matt hung with Jack, and then the rest of the evening kind of flew by.

The pool is back open here so we’re hoping to get him in it tomorrow; but if not we’ve got a pool physio session scheduled for Thursday.

Also chatted with the doctor which helped us wrap our heads around a few things. The most important one being what’s needed to have Jack be plane-ready; and it sounds like not much from a medical point of view other than getting him off the meds. They stopped giving him the final painkiller today! So the only “medication” he’s still getting are the vitamins for the chance of the underlying neurological disorder* and melatonin in the evenings.

That being said, there are a few things we want to see through before we’d be ready to make the move: getting him completely off the tube feedings, off all meds, and ready to move to an outpatient status. We don’t want to have him have to change therapists more than once as it takes some time for him to build trust in them so for us to move from inpatient to inpatient to outpatient at this point doesn’t seem like the best move for Jack; although we will continue to look into what our options are in Vancouver once we arrive home.

*Jack is still being treated with biotin and thiamine for the chance of an autoimmune neurological disorder that affects the basal ganglia after trauma or fever. 

One thought on “Day 36.

  1. Pingback: Day 43. – The Boy Who Breathed Again

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