Steve arrived yesterday safely from NC and was able to get some snuggles in with Porter.  Porter continues to do well and hasn’t had any episodes of his hr dropping since we’ve been here.  PT and OT have been by to work with him a bit.  His pallet is high and narrow and they’re not sure if that’s from being intubated for so long or if its due to the Noonan’s syndrome. Porter is starting to reach for some things which is good to see.  He’s had a little leak around his trach so we’ve been able to hear his sweet little voice make some cooing sounds and even cry.  Not that we want him to be upset and cry but it’s really cute to hear.   

They have started weaning his sedation and so far he’s tolerating it well. This week when the main team is back is when they’ll start really evaluating him.  They’re planning a cardiac MRI and there has been talk of another Cath.  

More to come!