Day 23.

Afternoon update:

Whoa. Well today is the day I’ve been waiting for from rehab.

The morning began with Jack’s first assessment from the head pediatric neurologist. The Cole’s Notes version: we have a lot of work ahead of us but the doc sees potential, first insurance-approved timeline is for one month of rehab, he wants to get Jack off the muscle relaxant asap (yay!), we’re going to start additional Physio using a method that will likely be painful for Jack but it’s been found to help patients make the necessary  connections to have appropriate motor movements, we’re going to be working on helping Jack rediscover his body and center again given that they are concerned Jack may not be recognizing the left side of his body (although I think it just wasn’t obvious in the exam. I think he does even if we’re still at a newborn level)

Jack’s on nap #3 while I write this, pushing him in the stroller. He tires easily from all his therapies. But, he’s been much more chill and receptive to therapy today.

So far he’s had:

  • physio: again even better today than yesterday, the mom of the other boy in Jack’s room was helping distract Jack as the physio worked. Today she focused a lot on sensory stuff with his hands.
  • occupational therapy (OT): the therapist is a total sweetheart and it’s essentially a very play-based therapy until we get our new therapist for help with eating
  • speech therapy: again very sensory, hands, mouth and neck related massage. Unfortunately it was scheduled right after OT so he was too tired.

We’ve now gone for a walk while he naps and the therapist will come back in 15 to try again.
-update: speech therapy went not sooo great but we’ve noticed a pattern. With every new therapist, he definitely doesn’t like it the first time and then he seems to get better the next time. So hopefully tomorrow will be better.

Overall Jack seemed more relaxed today and much more receptive to all sorts of things although less smiley. Now we’ve reached the “gruffalo hours” when we just try and keep him entertained until bath and bed!


The muscle relaxant I’m referring to above is baclofen- the one I fought to hold off on. One of the doctor’s in the ICU ended up putting him on a low does of it in the couple of days before we left the ICU. At the time Matt & I were pretty bothered by this because they did that without our permission, but we tried to remember that they were the experts and that they must believe Jack was in pain from the spasms in order to put him on it. Regardless, I was thrilled to learn that the neurologist at the rehab facility was eager to get him off of it. I really believed, even at that time, that the progress we’d seen from Jack already indicated he did not need to be on it. We no longer saw tremors or spasms and at this point only mild dystonia. We could easily bend Jack’s limbs compared to before in the hospital when he was very tense. 

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