Dec 2, 2008

Eye Appointment - Ptosis Follow Up

I don't know what to feel. Some days I think I've felt so much in my life I've used up my ability to feel. We had an eye appointment today with the opthalmologist. The last eye appointment Ainsley had on December 31,2007 I left bawling when I was told that the eye surgery that would correct her droopy eyelids (ptosis) would not take place at age 2-3 as I'd been told but at age 4-5. And that her eyes would, in fact, never look perfectly normal as I'd been told, but that a more realistic expectation would be that she be returned to the visual appearance that she had prior to her second cranial reconstruction surgery in July 2007. That was a bad bad day. Not a Happy New Year's Eve for sure. Today's appointment went better. But then how could it not?! I left in a good mood but with this weird underlying sadness. I felt like maybe I should cry but I didn't. It's like when someone dies and you know it would be polite to cry to show you care, but you don't. And worry about what it means that you didn't cry. Now don't worry. No one died. And nothing all that bad happened.

Things are good, really. The important things. Ainsley seems to be able to see. As well as you can test a two year old that won't let you cover her eyes and isn't verbal and doesn't understand the instruction "Look at the striped square". She was supposed to look at the square of stripes as they moved it's location to show that she could see it. She did for all but the smallest lines. I wasn't too worried about that. They were hard to distinguish from the background of the gray card.

They dilated her eyes. The ophthalmologist says "WOW her cups are big." but I'm not alarmed because I've heard them comment on "that large cup to disc ratio thing" so many times. He consults the records and sees they haven't changed in size. Good. No change is good. Two years later I still don't understand what it means but since he's not worried I'm not worried. The depth behind them is apparently shallow which is good because if not it can mean glaucoma. But he checked her eye pressures just to be sure. Fine. Normal pressure. Yea! I sure don't want her to go blind. (Eyeroll)

But the droopy eyelids (Ptosis), that get noticed everywhere we go, that is going to be another matter. The surgery that would help correct this cannot be safely done until she is about 4-5. But Dr. Weiss is concerned that she doesn't have enough brow to anchor to. So that may mean waiting even longer until she has had brow prosthetics (or potentially even a brow reconstruction) which her cranio-facial surgeon was projecting to happen at age 8. To say that I am displeased at the thought of waiting another 6 years or more to see her eyes would be an understatement. But I am left with just a vague sense of disappointment in a long string of disappointments. I'm hardly surprised which makes it easier to take. Fortunately I have a cranio-facial appointment scheduled for January 12th so I don't have to wait too long to discuss it with the surgeon.

I'm trying to look to the positive which is that she can see and is otherwise doing so well. A fact that the doctor commented on about 10 times. Apparently he says she is doing "a million times better than he ever thought she would". I appreciated his candor. Most people don't really tell you what they think. Especially doctors. I'm not sure whether I feel reassured by this. It's good that he thinks she's doing so well but the fact that his expectations for her life were so low is a little alarming. But I suppose it's hardly surprising. He kept asking what I thought, "She looks really good don't you think, mom?" "She's doing great isn't she, mom?" Probably he just didn't want me to cry like last time. Poor guy. But in answer to his question....well....

The day Ainsley was born and the days following everyone was acting weird. The doctors, nurses and everyone else kind of tip-toed around us because she looked different and was intubated. We kept asking each other "It's not that bad is it?" We always saw her beauty. And we expected her life to have value. I didn't want to tell the doctor that in truth I really liked how she looked before her surgeries more than I do now. A fact that a stranger or doctor probably can't understand. I really wanted to say, "No! No she doesn't look great. I still can't see her eyes! Can't you fix her eyes?!" If I had known the second cranial reconstruction would compromise her ability to raise her eyelids I don't know if I could have gone through with it. To me, getting a "normal" head shape wasn't worth it. But, alas, it had to be done to allow her brain the proper space to grow. And what's done can't be undone. Now comes the challenge of acceptance. And patience, as I wait for the day that the surgery can be done and I can see her beautiful eyes again. And hope. Hope that it really can be done.


  1. Very honest and moving post Susan. I recognize a lot of myself in your words. I hope you get some unexpected good news at the appointment with the cranio-facial doctor that maybe, just maybe they can do something to correct Ainsley's ptosis sooner rather than later. Let's hope. Sometimes, all we've got is ... hope.