Friday, June 6, 2014

Another Check-up

Addy had another follow-up appointment today. I haven't taken a lot of time to process new information yet, but I wanted to get it written down so I don't forget anything.

First, the good news: Addy's vision in both eyes is doing quite a bit better. Last time, I believe she was seeing at about 20/40... this time she was at about 20/25 for both eyes. Awesome! Dr. Y seemed to think it was a result of the patching*, but personally I think it was the new glasses... Addy seemed to be enthralled with them when we first got them a month or two ago (and nothing had been changed except the lenses), so I got the impression that they were helping her see significantly better. I'm sure the patching helped, too, but considering that her eyes were seeing equally on both occasions, I don't see how that would have had a whole lot to do with it. (*Dr. Y usually comes in to give her evaluation just at the end of the appointment after a nurse and sometimes another doctor have seen her, so I think sometimes it takes her a few minutes to get on the same page with everyone.)

The bad news, however, is that Addy's eyes are still not wanting to align (I didn't hear the numbers, but I got the impression that they were about the same as last time), and the tests they did today showed that her brain still tends to let her right eye take over and block out the vision from the left when she is using both eyes. So, as Dr. Y's fellow doctor put it, "We're doing good on part of our goal [preserving and enhancing the vision of the eyes individually], but not the other part [achieving binocular function]."

Bottom line? Dr. Y thinks Addy needs more surgery. She was very nice about breaking this news (not that it was very surprising) and did not try to put any pressure on me to rush the decision, or even to necessarily go through with the decision at all. But it was clear that that is her recommendation.

This diagnosis is very frustrating to me, especially because Addy's eyes were good -- or at least seemed to be -- at about this time last year. We were about 5 months post-op after the second surgery, and Dr. Y had found her alignment to be doing great. Our best guess at what happened between then and now is that Addy did nothing but grow a little bigger. Her eyes seemed well-aligned before, but the position of the eyes is not enough in itself. The brain has to recognize the vision from both eyes and put them together in a single picture in order for the eyes to truly work in concert. Evidently, Addy's brain has never done this. As I understand it, the head will grow a little larger as the child grows, so the eyes will change, but it is no problem if the brain has learned to use the eyes together. But if the brain is not in on the deal, the eyes can fall right back out of alignment as the child grows.

As I see it, then, we could go through surgery again, get her eyes realigned, and everything would be peachy... for the next year or so. Maybe we'd hit the jackpot this time and her brain would suddenly realize that these two pictures are meant to be put together as one. But if not, we'd be in the same position once again... and be facing yet another surgery. And perhaps another... and another. Somehow it doesn't strike me as the greatest option to be adjusting the eyes every 1.5-2 years. (I met a young lady with Addy's condition once who had surgeries like this all throughout her childhood and still never gained binocular function.) Shouldn't there be some way to make the brain click instead, solving the problem at its source?

I was not shy about expressing my frustration with this predicament to Dr. Y, and I asked her if there was any way to do this without more surgery. As I told her that I felt we would be stuck in this loop of surgery after surgery, she just sat there nodding with an understanding look on her face. Not exactly reassuring. :-P

When I asked about some sort of therapy or something to try to focus on getting the brain to work, she said that in her opinion therapies do not work. (Again, no big surprise there.) The studies done have not proven the therapies to be a scientifically sound method (i.e., they don't seem to work very well for many people). She did say that the glasses she prescribed for Addy -- specifically the bifocal part of them -- were meant to be a type of therapy, as they are supposed to help the eyes diverge outward when looking at things close up (where they would normally converge inward). Addy doesn't seem to be using her bifocals very well (she just looks over top of them), so we are planning to pursue an adjustment to her glasses that may encourage her to do that. Dr. Y also made the (kind of obvious) statement that the patching is meant to help in the sense that it makes the weak eye stronger and more likely to catch up and work with the other eye. So, I do recognize and respect the fact that she has been trying various non-surgical methods of getting the brain to work like it's supposed to, and we will at least continue to do these things and see if we can get them to make a bit more of a difference. However, I feel that we have been trying all these more accepted methods, including more than one surgery, and we still don't seem to be getting anywhere as far as Addy's brain is concerned. Furthermore, it seems that at this point, we are just doing more guessing and dice rolling. Maybe more surgery would help, maybe not... it's a gamble. It seems to me that perhaps we are just doing the same things over and over and hoping for different results, when maybe we ought to be trying a different approach.

Which brings us to another point: even if we did decide to do further surgery, Dr. Y would not be around to do it. She has accepted a new job and is moving across the country. She could potentially be available for surgery if we did it within the next couple of months, but otherwise we would have to go with one of her colleagues. And we would have to be getting check-ups (and any additional surgeries) from them anyway.

As we walked into the appointment this afternoon, I was praying for clarity. And while we don't know without further thought and prayer what exactly we will do, I'm wondering if, between feeling stuck in a rut with conventional medicine and ties with Dr. Y being severed, perhaps God is leading us to move in another direction. I have heard of vision therapies that claim to have the capability of training one's eyes and brain to work together to develop binocular vision, even when an individual has never had it, even as an adult. Yes, I'm sure it isn't super "scientific" in the sense that it hasn't been proven to work for everyone, but frankly, eye muscle surgery doesn't work for everyone either. And at this point, we're kinda thinking, what have we got to lose?

So, we are prayerfully considering some sort of vision therapy. We would appreciate your prayers with us for wisdom and direction, and ultimately healing for Addy, but peace with whichever direction we decide to take.

Thank you all for reading and praying with us!

1 comment:

Michele Clark said...

Prayers for you to find what is right for you and your family in regards to this! I can not imagine the if and what ifs you are thinking about after this appt. I hope everyone's prayers and yours is able to bring a little more clarity to what you need to do! Let me know if I can help!