Well, we have just gotten home from Greenville the last appointment I think of this week and Aunt Kim's behind and mind are very tired.  Gage and I discussed his driving some but Beth would have not of it. Anyway, I will start by telling you all about Wednesday at Duke.  We started the day early and I think we drove up at Aunt Kim's home around 730-8pm or so...It was a long day for my little sugar plum.  The first appointment was with Dr Rice who is the surgeon who put Gage's feeding tube in back in October 2009, and the tube had to be changed. I mean the young lady walked in, Aunt Kim went to Gage's head to hold his hands and kiss on him and talk to him, and the resident was at Gage's feet. The young lady grabbed hold of the tube that was stilled inflated and yanked. I mean it made a popping sound when it came out.  She warned Aunt Kim that I probably did not want to be standing where I was due to too close, she would hit me in the head when she yanked....I wanted to be close so I could get a hold of her should the need arise. Gage handled it like a trooper-He cried just a little,,,but Beth, she was sitting down in a chair far away from the action. I had already warned her that should she pass out we would not help her until Gage was OK that she would have to lay there. So she sat.  Gage now has a Mickey button that Beth and I can change at home every 3 months, and we can manipulate a little better to prevent leaking.  The MDs really spoke highly of how well Beth was keeping the site clean. The next appointment was Dr Gallentine, neurologist, and even though we love him I for one was very apprehensive about this visit. We were going to talk about the implant of the VNS device for seizures.  The resident walks in and asks us about the information we received in the mail and I say oh it was great but you really wanted to challenge us by giving it to us in Spanish huh?  She turned a rainbow of red colors...and we laughed. When Dr Gallentine came in he pretty much told us that this it- there are no new meds currently on the market to try; there are no trials Gage can get into b/c Dr Gallentine begged them to allow Gage to try; and even though the FDA approved VNS for 12yrs old and up since there is no other options--with Dr Gallentine's letters-Gage will be able to get VNS.  However, he was sure that he said over and over--Gage will continue to have seizures; he will NEVER be seizure free (until the Lord takes him home); and there is always the chance VNS will not work.  But this is it.  Gage's seizures are horrible. The Side Effects of the meds are not good.  So.......ML, Beth and I will meet with Dr Grant-neurosurgeon on Wednesday April 28 and discuss the pros and cons and then the decision will be made to do it or not by ML and Beth.  I want to vomit as I sit here and cry but the Lord is in Control and his will be done.  The story has already been written in the heavens were just acting it out according to his will that gives me some comfort.  I do OK as long as I have medical issues to deal with, but when I hold him and love on him and comfort him-I lose it. On with the next appt-the Nephrologist appt went well--the blood pressure meds are Ok, and we will continue with the same dose for now. Aunt Kim will continue to monitor him blood pressure and fax into the MD office.  That was short and sweet, and we never left Dr Gallentine's exam room the other MD just walked in and saw us in the same room.  It had rained and lightening/thunder and we never even knew it because we were up and down in the elevator and in rooms the majority of the day.  Today, Thursday April 22-We saw the Urologist in Greenville and we really like him but 6 months ago when we saw him he said if Gage's testicles had not descended it would require surgery. Well, today the right side was not descended and the left the MD could not even feel it. He told us that he was very very worried about putting Gage under general anesthesia for surgery due to respiratory problems and seizures.  He wants us to watch for a swelling-hernia and when (not if)it happens call and we will do the surgery.  We really like this MD b/c his son also has seizures and sees Dr Gallentine, but ML wants a second opinion at Duke. So we will be making this appt just to be sure that if we get this VNS under general anesthesia maybe we could do both at Duke.  In the waiting area prior to the visit, Gage had a horrible seizure. To the point that Aunt Kim was counting the seconds before giving breaths.  He was sound asleep. There was no warning, and I was rubbing his head b/c he likes it. Beth was filling out paperwork when Gage's eyes pop wide open, he starts gasping-short breaths, eye rolling, crunching extremities-seizure activity, and then he has apnea. I pick him up and am talking calmly to him, saying a little prayer to myself....a preparing myself to know that in a few seconds i will cover my nephews mouth with mine and give him a breath.  I cannot describe this calm I feel at this moment nor the despair I feel as I type this knowing that this is his life. That he can not be left alone; the love that i feel for that little guy is overwhelming.  Anyway, just a little drama in life of Gage. Right after that he got mad because I was holding him so tight; starting breathing like he was supposed to and then yawned and went back to sleep in my arms until he was called to the back soon after.  What a kid; What a blessing to my life; I just wish he would quit testing me on how to do CPR because I am an Instructor.  I am blessed beyond measure, and I know the right decision will be made about the VNS next week and his horrible wretching/coughing.  Thank you for your continued prayers
*BETH*