Appointments and test results

All the appointments are done. So we are not ready for surgery yet. Whew.  At our last appointment 6 months ago his aorta root had a diameter of 3.77 cm. It had grown less than a millimeter to today’s measurement of 3.85 cm. Dr. Dietz was pleased.

The doctor confirmed that we would begin planning his surgery when the aorta’s measurement reached 4.0 cm. The doctor explained the surgery to Eddie complete with a drawing.  You can see Dr Dietz’s handiwork in the picture I’ve included.

I really really wish Eddies aorta had not changed at all. Dr. Dietz was very reassuring. This was a much better visit than the last but I can’t keep my mind from thinking it’s less than 2 mm away from the threshold for surgery. Eddie thought it too.

Other news: good cervical spine X-ray results, good MRI results of head and neck, and only mild curve of the spine (12 degrees). We will definitely take that!  The doctor wants him to pursue physical therapy to help strengthen his joints. His knee popped out of place twice last night just while we were sitting in the room!  He also wants him to pursue swimming to help strengthen his muscles if we are able to protect his ears.

Including us there were only 2 LDS families in the clinic today and we got to meet the others. They are from NC, too!  It was awesome to get to chat a little and share with each other. I hope we’ll be able to stay in contact after we go home. It’s pretty isolating to have a rare disorder so finding and maintaining connections with other families ensures sanity.

Headed home tomorrow. We return in June for the Loeys Dietz Conference and next October for another visit to Hopkins and the NIH.

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