Eddie had his first echocardiogram at 2 years old. His aortic root showed an enlargement in that first echo that set us on a trajectory of this Loeys-Dietz life. He has echos every six months to check that dilation in his aorta. When it hits 4 cm, he will have surgery to repair it.
Eddie is now 15 so he has had well over 20 echos. Yesterday was a first for all of them….a very welcome first. For the very first time he has absolutely no growth in his aorta. Zero. No change whatsoever. Nada. None. A good appointment for us has been marked by minimal growth….perhaps two mm, but none?! That has never happened with Eddie.
This was a very good day.
Eddie also saw an opthamalogist….a corneal specialist, specifically. Rick had a concerning finding at his last eye appointment which the team at NIH thought might be LDS-related so they arranged this appointment at Hopkins. All was well, thankfully, but the doctor wanted to see Eddie, too, as he wants to learn more about LDS. Everything looked great.
Today is our last day of appointments. Eddie has scans, xrays, and endocrinology. Rick has a number of appointments, too….I think biofeedback, allergy, and hematology. Hoping we are able to actually get back to the room before 5 so we can relax this evening. Eddie is hoping his daddy takes him on the metro into DC for some exploring.