I hope everyone had a great July 4th and honored a veteran or service personnel at whatever function you were enjoying.  Chuck and I with our good friends Chris and Lynn and Little J were on Vacation at Rodanthe and there was a cook out; the prayer before we all started eating was awesome.  All military personnel were allowed to go first thru the line.  Anyway.... Reminding your kids the "Why" of these holidays is so important, and I told Hattie.  We are back from vacation and today Monday 7-12-2010 the day after Aunt Lisa's Birthday, Beth, Gage and I traveled to Duke.  Gage has not been doing so well. He has had multiple seizures, and they had to use Diastat last night.  It seems that just about every time he is startled or wakes up he goes into a seizure;  in addition to the seizures that regularly occur during the day. Beth called the on call Ped Neuro MD Wed nite due to seizures and his medications were adjusted until today.  Then she had to call Thurs to the nephrologist on call MD due to the fact that the change in the blood pressure meds was making him sleep a lot more than usual and constipation.  (Maybe Gage would not want me to tell you he has constipation). The thing is that when Gage wakes up from a dead sleep he goes into a hard seizure. Kinda scary at times. So we had to get up 4-430am Monday after vacation, and head to Duke. We arrived in record time because I believe my truck could drive itself.  While we were waiting, Gage was in Aunt Kim's arms sleeping and he suddenly wakes up and starts seizing and he is having these apnea periods (stops breathing) then gasping like he comes up for air.  Beth is wanding his VNS, I am rubbing and talking to him and the Lord, and counting, and Gage has these seizures one after another. Eventually he settles, because we are ready with the Diastat, etc...This is a Moment in the Life of Gage. Terrifying. Gripping, and Not a Thing you can do but Pray it goes away.  We see the nephrologist and Gage's blood pressure readings which Meme did while Aunt Kim was on vacation have been good, so no changes. His echo from last week was good so no damage to the heart. Dr Gallentine (who we love) comes in and we tell him all our concerns. I can tell he knows we are frustrated and he tells us we are early into the VNS adjustments. We have 3 months at least of driving up here every 2 weeks and he will adjust today. We tell him about today, and I describe in detail. He has an old timey doctor's bag (black one) yet he is young;  he listens to Gage- looks at VNS with computer and does adjustments increasing electric activity.  Then he tells us that Gage need to see a Ear Nose and Throat MD because of the apnea, secretions, coughing, etc...and that he has thought about this and that when Gage is asleep secretions collect or he gets in a position and his tonsils may be causing apnea and causing stress therefore seizure induction. So we are scheduled to see ENT 7/30/2010 and the sleep study is 8/9/2010.  We return to see Dr Gallentine on 7/26/2010.  We are also before waking him up, moving him etc---to use the magnet over the VNS and give him a JOLT to prevent the startle seizures maybe.  Beth has lots to think of.. As we left there, Aunt Kim was pushing Gage in the stroller on the escalator (yes the dreaded escalator) and Beth who is supposed to get on first and hold the front of the stroller.  Well....she almost takes a dive to the bottom.  Aunt Kim told Gage we would meet her at the bottom because he was my main priority and I would help her when I got down there. Luckily she only tripped " a little bit" and recovered.  She claims that her pocketbook weight threw her off and pulled her over?  OK.  Gage had some episodes on the way home. You know I write all of this stuff above about a 2 year old--JOLTing Gage, Apnea in the MD office, giving Gage a swipe of the magnet to deliver electricity to his vagal nerve before he wakes up fully to prevent a seizure and I am in auto mode most days.  You know I sat thru communion yesterday in church and cried the entire time for various reasons. I know the Lord has a plan for Gage and for me and for you too.  But Bless my husband who has to sit there as I snort and sniff thru communion and he doesn't know how to help.  My heart is broken but Dr Gallentine assures me that we have other things we are going to do get Gage some relief.  AND I KNOW that the LORD has a plan.  I just wish I knew what it was, but then again maybe I am better off not knowing.  I love the Lord and I love my family/friends and my sugar plum......I am back to the grind tomorrow...God Bless.
*BETH*