Today was Teague’s big day of doctors. We had a 1 pm appointment with the research doctor and a 2 pm appointment with the ophthalmologist-in-chief. Thankfully Teague cooperated and took an early nap for us and we arrived at Boston Children’s Hospital with a happy boy. I can not stress how awesome our experience was! We ended up having a joint appointment in opthalmology with the researcher and ophthalmologist – a 2.5 hour appointment. The research doctor has a study focusing Congenital Fibrosis of the Extra Ocular Muscles (CFEOM) and has been our main contact throughout the process. Both doctors were personable, easy to understand, and just fantastic in general.
A routine eye exam was done and then quite a few specialized tests, including some pictures and videos of things they found interesting. Everything they said went right along with what we had been told initially. Teague will never move his eyes up and down. Surgery will help to align his eyes. There are several issues that can occur with surgery – the eyes can end up too high and require immediate eyelid surgery so that Teague can see, or the eyes can skew to the sides and require a second surgery to align them back to the middle. The doctor didn’t expect that either of these would happen in Teague’s case, but nothing is guaranteed. The ophthalmologist mentioned he had done “lots” of these surgeries. Wade finally asked for a number, especially since this is such a rare disorder. The doctor said he has done 20 of these surgeries on children (and at this point Wade and I were pretty sure we would be returning to Boston for Teague’s surgery). The doctor’s surgery schedule is 2-3 months out and he does like an MRI done before surgery. Our best guess is this will be done sometime this summer.
We talked for a while more and then drove straight to the airport for our flight home. It was a quick trip, but well worth it!