Day 14.

Morning update:

Matt headed to the hospital first this morning, and got here in time to see the Physio as he was leaving.

Jack is waaaay more relaxed this morning, bending his arms and legs with ease. And even appears to be trying to move himself a couple of times. We could barely bend his arm yesterday.

Still tenses up when we lift him but it’s getting better as well.

I’m so glad I trusted my gut when the neurologist suggested giving him a muscle relaxant last week because of this possible dystonia/spasticity. I said no and now I can clearly see that as we move through these weeks Matt and I really need to trust our instincts and knowledge about our son in order to give him the best treatment and opportunity to rehab. I think it will become really important to find a doctor we really trust to help give us second opinions etc.

Yesterday we moved him to the balcony for a little bit in his bed which was great and then he seemed to get a little fussy, we moved him back to his room, and he promptly fell asleep. I think it made him really tired.

Today we got to move him in the stroller to the balcony!! And when we moved him from his bed to the stroller Matt was able to straighten his head for the first time since he’s been off the ventilator.

We tried to give him a tiny bit of water from a bottle this morning but he’s not quite ready. We’ll try again later today.

I’m floored by the progress we’ve seen again since yesterday.

What a little fighter we’ve got here.

💪🏻 🦁 ♥️


Tomorrow he is scheduled for another MRI, and we should get the results of this genetic testing for an autoimmune neurological disorder in about two weeks. We’ll likely move to the rehab facility on Wednesday.

I think I’ve also neglected to mention how great Craig has been. Keeping himself busy by fulfilling all of his OCD tendencies, washing windows, doing laundry and scrubbing the bathtub grout.

Still no cooking but he makes a mean salad and pours a great glass of wine.

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