Highlight of my year thus far: when our day nurse, Charlotte, and I were working with Jack to get boosted up in the bed, he used his still somewhat strong core muscles with a little help from me to sit up in the bed. I can't remember now which thing he responded to but I actually got to hear him say, "Yes" and he tried to play with his iPad but he was just too tired by the time he tried. 

Jack is off the ventilator. He is back to his home regimen of HME during the day and trach collar with humidification and 2 L of oxygen at night. His pneumonia is clearing up. 

He is still critically ill. His skin covering his skull is so thin and the swelling from surgery was just too much for it and he has some significant wound healing that needs to take place. He has a spot of exposed skull at the back of his head that I just couldn't look at during the wound care earlier today. 

His shunt has malfunctioned but so far does not appear to be infected. He has an external drain. Dr..Blount with neurosurgery and I are pretty certain that "Sundown Jack" was actually very sick Jack who needed the external drain. 

Jack has been successfully weaned off all the sedative drips but is still weaning off the drugs given to make withdrawals more bearable. 

The shunt malfunction and the fact that Jack has pneumonia and pleural effusion following the craniofacial surgery is coincidental or plan of God to have us on the right place at the right time but not cause and effect. 

There is a lot going on. I have no idea when he will get out of the hospital and I have got to go tend to wiggle worm.

Thanks for all the prayers. Keep them coming.