Surgery is coming soon!

Well, this is my first post as a "blogger." I have decided to start this as way to keep everyone in touch with our constantly busy lives. As most of you know, Colette's seizures have returned to a daily basis. She will have one really hard seizure every day, then sleep for several hours, and eventually return to her "normal" self. This is no way to live and we have known the meds aren't working and surgery is a likely outcome. We recently traveled to Detroit to meet with Dr. Harry Chugani ( the guru on infantile spasms) and Colette had an FMZ PET scan which gave us more detailed info about her damaged brain. He gave us his opinion which we then took to our neurologist at Vanderbilt which took it to the pediatric surgical board and here where are... Today we met with our neurosurgeon, Dr. Pearson, who was very confident in his surgical recommendations for Colette.
He suggests that we do a functional hemispherectomy and remove the right side of her brain. The surgery will be 6-8 hr. long. They will cut only the hair around the incision ( so we won't lose many of her beautiful curls!) and they will remove her temporal & parietal lobes. They will leave her frontal & occipital lobes for spacing purposes but these lobes will be "disconnected" and of no real use to her. She will be in ICU for 2-3 days post-surgery to keep a check on her fluids and bleeding. She will likely need a blood transfusion as well. She will then move to a normal room for 1-2 days and then hopefully go home. They will use plastic tabs to reconnect her skull and dissolveable sutures so there is no metal in her skull. His coordinator will call me in a few days to schedule the surgery and he said it will probably happen in 2-3 weeks. It will definitely be on a Tue. cause that's his long day for the OR.
So it's taken a year and five months to get here! This is hopefully the resolution we have been praying for to stop our Lettie bugs seizures. He told us to expect weakness on her left side but wasn't 100% certain she would lose function of her left hand; it's a possibility, but we all miracles can happen. As her mom I pray that a miracle will still happen and she will be as close to a "normal" child as her brother & sister are.
I'm sure as most of you read this it sounds extreme, but please understand every step we have taken with Lettie has been thoughtfully prayed over & never rushed! It's one of those things people say, "you just can't understand it till you've been here" I will continue to post on our steps toward surgery and fill you all in on the rest of my clan. They're all pretty interesting & special as well.