August 5, 2012

My son visited his opthamologist in June (yes, it takes me awhile to post). He is was a few weeks shy of 4 years old (this is 2.8 years post-surgery) was dilated and his vision was thoroughly examined, and despite his quite droopy lid, his vision is perfect. The doctor informed us, assuming his vision remains stable, we could opt for surgery for aesthetic/social reasons only. If you recall, our son had frontalis sling surgery with a silicone rod at 14 mos. old. There are two approaches for the next surgery. The first option is to open the brow and attempt to tighten the existing silicone rod. The pro of this surgery is that it is minimally invasive. The con is that once the Dr. opens the brow, he may find that the rod is embedded in such a way that he is unable to tighten it. If he is able to tighten it, there is a possibility that there may be no visible improvement post-surgery. If the surgery is a success, there is not telling how long the results will last (i.e. lid may droop again sooner than later). The second option is to remove fascia from our son's leg, and replace the existing rod with his own fascia again using the frontalis sling method. The pro of this surgery is that there should be measured improvement to the lid post-surgery, and the results should be lasting. The cons are that the surgery is invasive as there are two surgical sites (leg & brow) and brow surgery is quite involved. With either surgery, there is no promise on how successful the lid lift will be, and how long the lift will remain.

My husband and I think we will move forward with surgery this winter so that by fall 2013, when our son starts kindergarten, he will have a better aesthetic and not need surgery for some or all of his grammar school years. We have not decided which surgical approach yet. I will keep you posted on our next steps.

At age 4, my son is aware that his eye is slightly different from others, but still doesn't seem bothered by it. My son, myself, and my husband occasionally get questions from other kids (sometimes adults) like..."what's wrong with his eye?" or "does his eye hurt?". I often get strangers commenting "someone looks tired!". But, other than that, life goes on as usual. My son plays sports, swims, runs, jumps with no interference from his lid at all.

Let me know if you have any questions/comments.

Post-Doctor Visit

My son had a check-up two weeks ago. The good news is that his vision is perfect. The not-so-good news is that the doctor felt his eyelid was "decomposing" (his words, not mine) thus drooping into his line of vision. The lid is just outside his axis of vision, but if it falls anymore, then it will begin to effect his vision. The doctor considered making us start patching his good eye again, but decided not to proceed with that (thank goodness). He told us to expect another surgery sooner than later. He wants to see our son again in 3 months to closely monitor any further decomposing of the lid. We see him again in May, and I'll provide an update then, if not before.

January 9, 2012

I haven't added photos in quite awhile. So included are some recent photos of our son 2 years 4 months post-surgery. He had surgery at 14 months old and is now almost 3.5 years old. We think his eyesight is normal, and we feel his eyelid is slightly droopier than right after surgery (but it is hard to tell). He has a check-up in February and I will post after the appointment to let you know the findings. Now that he is 3.5 years old, I have begun to tell him to "please open your eye" when it is really drooping and sometimes he does intentionally open it more. So, if we are taking pictures, I do try to get him to open his left eye. His specialist did say that as he got older and was more aware of the drooping eye, that he should be able to make an effort to open it to better match the other eye. We'll see if he starts to do that more over time. He doesn't yet realize that his eyes are any different than anybody elses. We will see what age that occurs. I dread the day he notices, and just hope his personality and spirit don't let it get him down.