Since a prior post I have gotten more information. I am feeling so much better. Thank you to those who have assisted! Insurance covers all "in network" docs the same, so if we use an out of state one (Dr. Paley or Dr. Herzenberg, for example) the out of pocket is the same as if we continue with doctor at UNC. Dr. Paley has numerous videos posted on his site at www.limblengtheningdoc.org under the conditions page, and Sinai Hospital's site (Int'l limb lengthening center) has a lot of helpful patient tips about treatment etc. I have emailed both Dr. Herzenberg and Dr. Paley and have gotten prompt responses. Medical records and xrays are on their way to those experts.
It has been such a blessing to have both Dr. Herzenberg and Dr. Paley respond so quickly and willingly to my inquiries. Being a parent (and with a lot on my plate with work, commuting, taking classes etc.) thoughts and fears about my son's leg are a daily (if not hourly) weight on my mind. Knowing how busy these doctors must be, and how gifted they are to work such miracles on our children, makes the responses all the more touching.
I have also gotten some emails from others who are willing to share their insight and strategies to navigate the "system". Thank you all.
At this point once the medical records and xrays are delivered we will get the opinions of the experts and move forward.