Almost a year and a half ago, I first shared our steps into Makiya’s eye troubles.
Makiya is now just over three years old, and “very bright” in the words of her doctor today. She is very smart, high energy and full of humour.
She has become very comfortable with these eye appointments, obviously loving the little games, videos and puppets that are part of her examinations. In the days leading up to her appointments, she can barely contain her excitement and eagerness for the day to come. Her ease, of course, has made the journey of learning what is really going on a little easier each time we go.
Her eye has not improved, although we hesitate to say that it has actually declined. I have found comfort now that she is able to talk in that she is able to tell me now that her eye is more irritating than painful. Another positive that we see, in hopes of it signifying, well really, anything in the way of good news, is that Makiya can completely control her eye when it does wander out. She actually finds it to be a funny little game, “Look Mommy/Daddy!!” as she lets it wander outwards, and then with a little smile, brings it back in. In having this control however, it makes it very difficult for the doctors to really see what we see on a daily basis. Though we were previously given the two names, Intermittent Exotropia and Divergent Strabismus, we don’t know exactly where Makiyas condition sits within those terms.
Last month we had another of our bi/tri-monthly visits to the eye specialists. Dilating drops were given so that they could really take a look inside her eyes and see what was going on, and as always, Makiya was a trooper through it all, three exams from three different people and not a fuss from her. More difficult for me, was seeing her response to the eye drops; she could not see properly! One nurse had given her a fancy ring on our way out and as excited as Makiya was to have it, she couldn’t see what was on it! What I clearly saw as a star, she saw, hesitatingly, as a flower. After the appointment, I took her for lunch before heading home, and it was hard to witness her struggle with how much sunshine was pouring into her eyes; she was seriously bothered. Then, when we got home, she became excited at all the “pretty colors” she was seeing as we entered the door; her eyes adjusting from the bright lights I can only assume.
Another distressing part of that visit was that she seemed to be having a new found difficulty with some of the pictures that she had previously excelled at. My heart sinking as I watched her sit in the chair struggling to figure out what she was supposed to be looking at. Where we had previously been reassured that her vision was perfect, I was then told that it seemed that she in fact had some trouble in the eye that WASN’T wandering. We hopefully considered that it was due to the drops and scheduled an appointment for this month to re-examine.
Today was a scene similar to the one that played out nearly a year and a half ago; Daddy, little red haired girl, and Mommy holding hands as they enter the tall brick building en route to the Orthoptist. Parents nervous, child excited.
She raced to press the button for the elevator, exuberantly shared her joy in riding the elevator, walked purposefully to the books once in the office, and then, leapt out of her chair excitedly as the doctor came out to greet us. “Hi!” said Makiya as she practically ran into the examination room and hopped up in the chair.
Today, the inability to see and name the smaller objects on the screen was even more pronounced then last month, in that it seemed to bother Makiya that she couldn’t figure them out. It was not caused by the drops, but is in fact a flaw in her vision that was announced to be slightly worse than first thought; although still not enough to warrant treatment.
Her wandering eye was hard to “break” again today, meaning that the doctor is not able to see it to the full extent that we do on a daily basis. Frustrating for the doctor who is being told something is there, but she can’t fully see and frustrating for the parents who see it continuously and only want their child to be okay.
Surgery talk came back to the table today, as she is not improving and concerns arise the older the child becomes. If necessary, it is preferred to provide this surgery before the child is of school age so as to eliminate/lessen any problems that would likely arise as they head further out into the world. Not a simple cut and dry decision in the eyes of the parent, on so many different levels.
We have decided to make another appointment for a few months down the road, at which point we will take another look, and, decide whether we in fact want to proceed with the journey towards surgery or continue the watching, waiting and hoping.