We have had many questions of concern when it comes to Emily and her eyes, especially concerning our other SIOD families and if this is part of the disease. The specialists aren't saying it definitely is, nor are they saying it isn't. The fact is that until now this hasn't been an issue, yet remember unfortunately not enough children live long enough to find out a lot of key issues when it comes to SIOD. So again, Emily is teaching us about SIOD. Since her surgery in July from the right eye detached retina things have been a bit harry.
The surgery itself went well, but not the aftermath. Emily is still unable to see well, if much at all. Add to that her bronchular issues, and other specialist appoinments life continues to stay busy with her medical needs. Emily's bronchular procedure was surgery #61 and now we have found that she will have at least 2, if not more eye surgeries in the future. One on each eye and perhaps a few more.
We have Emily's specialists from head to toe working on her SIOD needs and working with Stanford and others like AI duPont on the EAST coast that know her to try and come up with outside of the box thinking. We want to not only help Emily, but other kiddos with SIOD and what they may experience as they coninue to thrive.
