HOW???

So far we have surgery scheduled for less than two weeks away. The only thing that will change that is one of three things: Illness. Our third opinion next Tuesday comes up with something different that we trust more. Or divine inspiration that would likely come from prayer/ and or the number two option anyway. So it is Dr. Vicari (Chicago)or bust.
Dr. Ackerman (Riley) is recommending a reconstructive craniectomy- which is where they remove part of the the skull- in this case the frontal bone, reconstruct/ contour its appearance including breaking the bone where the suture should be and replace it to establish a more normal growth pattern and appearance. They will do this using plastic screws and floating plastic disks they place in the metopic suture and the frontal/ brow bone. They will be widening the brow a bit to make for a more normal looking temple area. Lilys are narrow. It is our understanding that although they will be working in the eye area they will not be changing anything about their appearance.
She will be in the pediatric intensive care unit for at least 1 day - likely two then hopefully transferred for the next three to five days for continued healing before returning home. They will wake her up as soon as possible after the surgery which to my understanding is to help her metabolize the drugs quicker. However she will be very very grumpy.
I cannot even begin to imagine what those days in the hospital will be like but we have our faith and amazing family and friends who have offered to help in any way they can. This is a tremendous comfort.
Lily is remarkably expected to be able to return home with "light play duty" but they glue things back together pretty well and most parents say their kids are back to themselves in a couple of weeks.
I just want this to be over if it is going to happen - after the Vicari appointment if we are still going forward we will begin to discuss the surgery with Miss Lily. She is very aware that something is going on- however with her comprehension issues and age she doesn't have all the details just yet. She told me one day that they are going to "fix her ridge" so she is getting alot of it. It will be over soon either way and for better or worse no turning back...I'm reminded of my beloved Papaw chone (Grandma Joan in Lily-speak) and her most quoted and wise saying "This too will pass" so simple and so true.