Okay, finally, I feel like we have some positive answers (for now). Gage has had unexplained intermittent pain for the last year. It is random, it is not made up for attention, and it in fact causes him to remove one of his much loved hearing devices to relieve the pain at times.
Well today, we got some sort of explanation as to what may be occurring. Again, the doc doesn't feel AT ALL like the infection is coming back. Whew. He did however just visit Greece a few months ago for that cochlear implant convention type thingy (can't remember what it was called) but he did hear about more random children complaining of odd and unusual pains around their devices as they age or approach the teen years. The docs have gathered that certainly in children like Gage, who have had their head cut open SEVERAL times, maybe the nerves have rerouted around the skull and can become hypersensitive. (did not write this down so I hope I'm at least close to what he meant) I've read about it some and found this link interesting. This pain isn't serving a purpose to warn him he's being harmed or to allow healing time for an injury, it just exsists at random times.
So basically, he'll still have to live with it. He has developed great pain management already by removing the device to rest his head, then replacing it when the pain has lessened. So I'm fine with that. It may affect his future IEPs though. I may need to add in some arrangements when he's only using one device. I will think on that and cross that bridge later. His doc is fully qualified to handle Gage, we trust him and Gage loves him and trusts him more importantly! Dr. W will be helping teach a course soon in Michigan (Temporal Bone Dissection) and I'm so glad he's able to go around the world and share his brain. I know there are lots of kids who need his wisdom and it sucks at times that he's had the opportunity to learn from my Goldenhar Syndrome Child, but we don't know what we'd do without him!!
So for now, we are confident that it's hypersensitive nerves. That has made the most sense to me thus far. And, all I can do is pray he keeps managing it well over the years. Mamas don't like seeing their babies in pain. And my child is 10 and finally weighs 55 lbs!! Woop woop. Now that seems tiny to most but we waited YEARS for him to weigh 20 lbs! So we are glad to finally see 55. One day, in a few more years, he'll be 60 lbs and so on and so on....