Well, we went to pre op and to see Dr Gallentine on 8-24-2010 tuesday.  We had to get up at 400am and be on the road by the latest 5am. Beth said Gage was up at 3am and then he had the nerve to sleep all the way to Duke. I could hear him snoring in the back seat.  It was horrible weather raining cats and dogs on the way up there and we took a new route trying to bypass the morning commute.  WOW... Anyway, I did not get any road rage, and we arrived on time. Beth and I have this drive down and the packing and unpacking to science.  It is like a combat mission.  I grabbed the parking ticket, She gets the diaper bag, I get the stroller out, she sets it up while get the suction machine and feeding machine, and medication bags out. I blindly lean back without looking and hand them to her leaning over a sleeping Gage, and she arranges them on the stroller as I undo Gage from the car seat. I pick him up and we both strap him in. We shove his pacifier in his mouth, put his blanket over him and over my shoulder I hit the lock button. We always park on the 3rd parking level. This is the routine. Automatic. All of this is scary b/c sometimes we do not even speak when it is so early except we always say "do you have his pacifier" because a life without it is not a good a day.  Remember previously Aunt Kim bought about 5-6 and went to 2-3 stores looking for the RIGHT ones after we lost one after a cookie swallow. Aunt Kim today had trouble on the escalator. I almost made Beth take a header down the steps.  I split two steps-Gage slept thru it all- but Beth and I were laughing so hard and finally I appeared to have awakened fully.  Wow, it was early and I am tired.  Anyway,,,enough complaining. We go in and register and are pre-op greeting nurses, techs now by familiar faces and names that know us now. But even though these are familiar it NEVER gets easier knowing the reason we are here. NEVER. I mean we go thru the steps like a line dance but WOW......we sit and wait for our names, we know whats next the weight, vital signs, medications checks, and then find us a room. As Beth is up there registering Gage, and we fill out paperwork-because Beth will go to the bathroom and I will complete the paperwork ----I will sometimes look at Gage and think "What a miracle, what a blessing, BUT, BUT, BUT, BUT.......Lord cant you just stop these seizures-I mean the MDs here on earth say he has what 5years of life and we have used 2 years and 3 months can he not be seizure free the rest of the time?; OR Lord now their telling us he is not breathing 16 seconds out of 60seconds on an average in a minute---can you not stop that?;;; Now Lord, you have us worrying that his skull is too small and not growing can you not help Gage with this?  Doesn't the little guy have enough going on?  I mean Lord I am FULLY AWARE THAT ONLY YOU KNOW THE DATE, HOUR AND TIME WE WILL LEAVE THIS WORLD, but Gage cant keep on like this. I trust you to be there for him; to guide those who are administering care to him; and I want you to give our family strength to help Gage and listen to what you want us to hear and to do what we have to help Gage."  During all of this time I feel like the majority of the time I have been on my knees or looking up to the sky looking for guidance.  Even in my Aunt Rambo stages-I look up, close my eyes begging for patience and understanding and the ability to hold my tongue that can be a sword of destruction to all I come in contact to.  God Bless my husband.  He takes it and only recently has demanded my time again so that we sit quietly by Roanoke River or Rodanthe shores and discuss why we love all the things we love.  He is so smart. I truly and a blessed woman. We registered Gage for his surgery-no surprises for Sept 2nd at Duke. He will be in Pediatric Intensive Care after the surgery due to all they procedures they will be doing. We will have to stay in a motel across the street. The seizure MD increased the VNS device. Gage had several hard seizures while we were there. No surprise.  We had an uneventful drive home.  I will let you know any other news.......thanks for all your prayers.......it is just so hard.  I still say I am sooooooo blessed. 
*BETH*