This afternoon Joshua was having his bandages changed when his nurse looked up at me and said, "Susie, it's just burst." His encephalocele burst open, I think just from the bandages being removed slowly, even though they were drenched in saline. Within a few minutes his encephalocele was empty. That was 6 hours ago. We thought he would pass away quickly, but he's still here. He's had 3 sets of seizures, but doesn't seem to be in any pain. After about an hour he put his head right up, opened his eyes and looked around. I think it's the first time he discovered he could move his head, because it wasn't heavy anymore.
We are home with our family (my parents and brother came home quickly) and enjoying our time with him. Lots of cuddles, pictures, kisses, and tears. I don't know what will happen next.
Please pray for us while we walk through this.
What a miracle that we got more time... even in this. We thought he'd be gone within an hour.