Already had Jack on my chest by 8:30 this morning. We read Good Morning World and he fell asleep.
They took out his urine catheter this morning… one more tube gone!! We’re now down to his nasal feeding tube, and his IV line in his arm and a couple of vitals censors.
His eyes seem even a tiny bit more “there” this morning. Still not focused but an improvement all the same. I still feel like he’s showing signs of withdrawal.
Craig spent a couple of hours with Jack yesterday and during that time Jack was mostly awake. I’m sure he loves having Craig here.
The neurologist said yesterday that he will run some tests to see if there is any underlying autoimmune disease that was triggered by the infection that might have caused these lesions in the basal ganglia. He has also recommended that we put Jack on baclofen (a muscle relaxant) for the spasticity and dystonia we are seeing but we have asked to wait on that for now. We believe we’re seeing progress and don’t want to add more drugs to Jack’s system as he’s trying to wean off others.
Every day seems to have these moments of hope along with these moments of heart ache.
Matt and I are both looking forward to transferring to the rehab facility and beginning the next phase in this journey (or as someone described it to me… “this torturous mountain”).
However hard it is for us, Matt & I are so floored by this little boy’s strength. I can only aspire to try and remain as strong as Jack through this process.
Thanks for the songs and sounds, we’ve been playing them for Jack.
Matt & I snuck out for some sunshine in the late afternoon while Craig hung with Jack.
When we got back Jack clearly and obviously focused his eyes on both of us. He even almost cried. Which of course is hard but also amazing! That’s the first real emotion we’ve seen from him.
Then, this evening several times he was able to focus, look right at me and track me when I moved. HUGE!
Still seeing big motor deficits of course but again, it’s baby steps for this amazing baby.
He also was able to focus on his bear and track it when I moved it. Matt’s cousin wrote Jack a really powerful email which I read to him while he watched me the entire time. By the time I was getting him ready for bed he was able to focus and look at me for up to 3 minutes or so at a time.
Matt and I also had a couple good discussions with one of the doctors that we really like and he affirmed that he’s definitely seen progress in Jack since the last time he saw him (which was a couple of days ago).
Tomorrow they’re hopefully going to help us move Jack to the balcony where we’ll be able to be outside as a family and enjoy some of this amazing warm weather we’re having.
Just when Matt and I really needed it our baby boy gave us a really positive sign.
An added note: prior to Jack focusing his eyes, he seemed pretty catatonic. This was starting to wear heavily on both Matt and myself. So to have Jack show this sign of progress was both timely and a relief!