Emily and I are heading back to the University of Iowa for her eye surgery Wednesday. We hope to get a room with the Ronald McDonald House there, and if not they can get us a reduced rate at a nearby hotel prior to surgery and for post op. We've been fortunate to stay at a few RMDH across the country over the years as we go to different hospitals for her SIOD rare needs.
So what is being done exactly? Well... in simple terms, yet not the full scope- yes, she has a detached retina and it needs repaired. She also has pigmentation scarring in both eyes. We knew this and were being followed for it to see if it was an SIOD thing or something else. The only other SIOD patients ever to be documented with any kind of retina issues were a female sibling set documented back in 2003 and they are no longer living. (Although the pathology of SIOD is currently not well understood, the underlying immune dysfunction of these patients may contribute to development of these ocular conditions. These findings may help to elucidate the pathophysiology of SIOD and lead to potentially new treatment options.) Ophthalmology Journal
As our new Iowa ophthalmologist told Emily, "Thank you, Emily. I am learning something new from you today."
So in a nutshell- the surgeons have not ever seen or worked on an SIOD kiddo, but the one surgeon is highly skilled in macular degeneration and will be overseeing her surgery. They are hoping to repair all of the left eye of the retinal edema and the multiple breaks in the retina, but not guaranteeing full vision repair or that the repair won't need to be done again. They will also provide some drops for the right eye to hopefully keep it from detaching.
Emily continues to teach us all about SIOD, about courage, and about believing in possibilities as she defies ALL the odds stacked against her. Now excuse me while I do laundry, dishes and spend time with the fam before we need to divide and conquer again. Stay tuned...
