So we went to the Outer Banks for Vacation the first week of June and had a great time - then back home again to start extended school year and then off to Columbus this past week to see Orthopedics and go to the PWS Clinic. I am in a blur it feels. His VEPTR on the right side is holding on by a "whisper" but we are holding out until October to switch the entire thing out - its still keeping the boy straight and the infection seems to be gone (yippee) so we are happy. We just hope we can make it that long without any excitement.
Our PWS clinic appointment went well - they increased us to .7 dose of Hgh over our .6 - so he's growing. Weight and height were going with his growth curve so they were pleased. Diet is to remain the same. Still unsure of how long we are staying with the clinic there - its just that the VEPTR has kind of locked us in there and we go to so many appointments with that. Just don't know. Eric wants to see about going somewhere in Pittsburgh maybe, and sticking with the Ortho in Columbus. We are so indecisive - its amazing we ever married. :)