Update

Roberta is writing this update, so I am sure some details have been forgotten.
Sam slept pretty well last night and had to be woken up this morning. Erin went home last night about midnight and got some rest and Jeff stayed with Sam overnight. Sounds like that is the plan tonight too. He had a better morning, though still clearly uncomfortable and just not content. Sam had a swallow study and esophagram this morning and it showed he had significant reflux, which Erin thinks could be seeping into his sinuses and causing pain. Erin is practically a doctor, she doesn't have the letters behind her name, but dang she knows her son.
This evening Grandpa John and Grandma Joyce walked him and tried to calm him down to fall asleep and eventually he did fall asleep in his mommy's arms and was asleep when I left the hospital about 9:45pm
Tomorrow is a big day, Erin and Jeff will have a care conference with many of Sam's doctors and other representatives from support services. Sam will also have tubes put in his ears at 11:30am.
Erin and Jeff are truly amazing parents...Joyce, John, Donna, Kelsey, Brenda, myself and others are also taking their turns with Sam. It does take a village to care for our precious boy.
PLEASE keep us all in your prayers, we need them!
More to come after tomorrow or if Erin reads this and adds what I have forgotten!