In Limbo - Questions to ask at the first appointment

So, I'm sitting here during nap time in my house (it's a beautiful two hours) and usually this is when I do work for my job, clean my house, or cook dinner for later on but lately I've been cruising the internet like crazy. I know I know, I can hear people shouting at me to stop googling  but it's in my nature to research everything.

So.... instead of freaking myself out even more I've decided to start jotting down questions I want to ask the Neurosurgeon on Thursday.

• What caused Benjamin's Metopic Craniosynotosis? Is it genetic? If so will it cause any other health issues.

• Is this causing his increased fussiness, inability to bounce or swing without crying/screaming and constant vomiting after feedings?

• Is this causing him any type of pain now?

• Can this cause any long term damage such as delays in development, vision, behavioral problems?

• What type of Craniosynostosis does my child have? Would you consider it mild, moderate or severe?

• Can you describe the type of procedure you are recommending? 

• How long is the hospital stay and overall recovery period?

• When would you recommend my child have the surgery and why? (What is the preferred age at the time of surgery?)

• What are the possible risks/complications if we choose not to have the surgery? 

• What are the possible risks/complications of the surgery?

• Is it likely my child would need a blood transfusion during surgery?

• What type of preoperative testing will be needed?

• Can any preoperative testing be done near home or does it all need to be done at Children's?

• Will my child wear a helmet after surgery?

• Do we need to see any other specialists, such as a geneticist, ophthalmologist, or ENT?

• When do we need to come see you again? How often will we continue to see you?

• What prescription medication does my child need? How often?

• Should we do anything now while waiting for surgery/helmet/follow up visits?

• Are there brochures or other printed material that I can take with me? What websites do you recommend?

• What is the likelihood of future children having the same condition?