It’s been 48 hours since Evan’s PEG was inserted.  Since then he is back to his regular cycle of going through long periods of sleep followed by long, painful periods of what we call contractions.  For hours at a time he stiffens up, arches his body and cries followed by a brief periods of calm before the next contraction start back up again.  Holding him, massaging him or talking/singing to him does not appear to make it better, so we are left unable to help Evan through his contractions.  This is hard.
The doctors continue to adjust his medications.  Starting tonight we are going to give him a larger dose of the chloral hydrate (sedation medicine) to try to get him back to a normal sleep cycle.  I wish we had a more significant update, unfortunately progress seems to happen slowly.  Please keep Evan in your prayers and we hopefully will have better news for you soon.