Gavin's 2nd decompression surgery

As you may know, Gavin had his first decompression surgery on 7/20/2015. Since he was only 7 months old and his skull wasn't fully developed, he only had the boney decompression. We all knew we would be going back for another surgery since we found out he was missing his C1 arch in his neck but we did not know that things would be getting worse for him after the surgery and we would be getting all his tests done so fast. His choking has started back. His neck jerks alot during the day. He constantly grabs at his ears, neck and the back of his head because he is in pain and as many of you know he has began his screaming spells again. He also has severe apnea and is suppose to be on a Bipap machine but will not use it. We have been told the apnea is caused from the Chiari so we are hoping to have another decompression soon. With that, he had a MRI done on 11/3/2015 and was suppose to have his CT done instead. The insurance company is refusing to pay for this test since he has already had one and the doctors here in SC are fighting with us back and forth because they need more explanation that what is given so we have decided to take a trip to NYC to get the rest of his tests done along with an appoitment with Dr. Greenfield to go over his CT results and for Greenfield to examine Gavin. This trip will be a 4 day visit as one day is travling, another is the sedation for the tests and the other is to see the doctor followed by going back home. If you could, please share Gavin's story so we can make this trip safely and easily. We appreciate all your kind words and support. #ChiariStrong #MyHerois1