Motherhood

Mya’s Eye Update

It’s been 5 months since Mya had her eye surgery to fix her infantile esotropia, or better known as crossed eyes. 5 months since she went from having near completely turned in eyes to looking you straight on with those beautiful blue/grey peepers of hers.

The first procedure had her put under for about 90 minutes (45 minutes per eye) while the surgeon removed the inner, medial muscles from each eye and reattach about 6mm further back. The surgery was a wild success with Mya handling the anesthesia well, recovering well, and the results were monumental.

These pictures were taken within 2 weeks of one another…

At each post-op appointment since the procedure, I’ve sat with the surgeon and heard both positive and negative news.

Positive: She’s able to fully rotate her eyes, has full range of motion in both, and appears to be seeing very clearly.

Negative: Her left eye is still extremely weak compared to her right. Her right was so strong since birth that even after we mechanically fixed the issue, her brain is misfiring signals and is almost entirely sending those signals to her right eye. Her left is physically able to move and to look at things, but it just isn’t strong enough to always do so.

At this point in time, I would say that 75% of the time, Mya is looking directly at you with perfectly straight eyes. The other 25%, her left eye turns in slightly and only her right eye is looking directly. The turning, or crossing, of her left eye is much less pronounced and I’m sure someone on the street may think something may be off but wouldn’t initially be able to determine that it’s her eye that is off-center.

To remedy this since her surgery, we’ve continued patching Mya’s right eye for roughly one hour per day. This allows her left eye some time to function completely independently of her stronger one. And the entire time she’s wearing that patch, her left eye is dead center and is fully functioning. It’s like a little brother or sister who can do things when they’re on their own, but when their older sibling (and in this case, the right eye) is around, they just let the older one do it for them. The left eye takes the back seat when the right eye is around.

As well as patching, we’ve also had Mya in glasses for roughly 2 months now. Our surgeon sees the slightest amount of astigmatism in Mya’s left eye, so the hope is that if we can correct that extremely small amount, her left eye will see perfectly clear and work to its fullest abilities. I don’t know if that works, but boy does she look adorable in them! ❤

Our last eye surgeon appointment we essentially got down to brass tax together. We are now in the position that we’ve tried any and all non-surgical treatments to help strengthen her left eye, but it hasn’t been successful. Her left still crosses inward and is not strengthening itself with the strategies we’ve used.

I think Mya is such a beautiful little girl with the most piercing light eyes. She’s stunning. Physically, I would never touch those eyes again because I think they’re perfect the way they are. Having a slight turn every so often (especially when she’s tired) isn’t reason enough for me to schedule another surgery.

It is the fact, however, that her left eye is not strong and her brain doesn’t utilize her left like it should. This could lead to larger issues with her actual way of life. Reading could be an issue, focusing for long periods of time could lead to headaches, driving, sports, drawing, and on, and on, and on. Her actual way of life will be hindered if her left eye doesn’t gain its strength. To take a part of her future life away from her is not fair, so we must go back into that OR again, whether this mama’s heart likes it or not.

So in mid-June, we head back in and have Mya be operated on again. This time, the surgeon will take the lateral, or outer, eye muscles and tether them slightly. This will essentially force her left eye to be centered on its own. If it’s in the correct location, she’ll see properly out of both without having to even try. The brain will fire signals to both eyes and she’ll be able to strengthen the left while also seeing clearly out of both.

The risks are still very much the same with high risk of infection in the eye since she’s a little one that touches just about everything, followed by touching her eyes. And there is a still a chance that an additional third surgery will need to take place.

I’ve avoided even sharing the news of another surgery because I sometimes just don’t even want to think about it. I worry about the risks, the anesthesia, if this is the right decision, if she’ll have to get another. The list goes on and on. But I adore our surgeon. I know she is so well-educated, she’s thorough, and she genuinely cares about my daughter. I prayed for a surgeon like her and the Good Lord provided her. Now the prayers continue as we maneuver yet another surgery in a few months, but I’ll keep my faith that God is always watching, always listening, and has a plan for my daughter that is going to wow the world someday. And those eyes will be stunning them all while she’s at it.

xx Rachel

9 Comments

  • Jason

    Hi, our daughter is 2 and is having similar issues as yours. We initially thought it was duanes syndrome as well as her left eye appeared slighty esotropic and never moved out. We began vision therapy and now her left eye some times moves outwards together with her right. I recommend looking into therapy (not just patching) with syntonics. I would like to know how your doctor knew Mya didn’t have duanes syndrome and how much movement does her left eye have now. Thanks!

    • growingupkemper

      Hi Jason, I’m so glad you found Mya’s story. Sometimes it’s just so great to hear another one’s journey. I appreciate you sharing what you’ve been able to do with your daughter. Yay to moving together!! It’s amazing how much time we can watch those eyes and study them for that kind of progress. I’m so happy therapy is working for you!

      We had three different doctors (an optometrist and two different orthoptists) diagnose Mya with Duane’s. It wasn’t until I got to my two eye surgeons that they immediately say it wasn’t. There is one key factor that only patients with Duane’s exhibit and Mya didn’t have it. If one eye moves outward as far as it’s able to go, the other will actually pull up and retract into the eye socket. It can be distinct or it may be very subtle. With the amount of tests that my surgeon performed on Mya, that never occurred. Once we had the first surgery and her eye muscles were loosened and were physically able to move, we saw for the first time it was 100% not Duane’s and she had the ability to move her eyes the full range.

      At this time, both eyes have the ability to move inward, outward, up and down the full range, and she is able to keep her eyes working together the bulk of the time. We are just dealing with a very strong right eye compared to her left. She CAN do it, but it’s a matter of her brain not necessarily WANTING to make it work all the time. With going so long without having to fire to both eyes, it’s become our biggest challenge now to mechanically making everything work together.

      • Jason

        Sounds like she is doing very well. We have been using syntonic lights, trying to make her left eye look left, and exercises to make her use both hands out wards together such as high fives/patty cake/wheel barrel exercises etc. We used to patch but both therapists didn’t want to use it long term and didn’t think it will help with eye pairing.

        Just as yourselves, we have seen optometrists, an ophthalmologist, and working with 2 therapists due to covid. My main concern is duane’s, however our daughters left eye movement has improved a lot the past year. Some times she has the narrowing of her left eye when looking right but this has also improved. The main symptom we are seeing now is some times only her right eye moves left with 0 movement from her left, other times they move together looking left – this is very slowly improving. The inconsistency is what is throwing us off but gives us hope that it isn’t duanes. I think Mya is experiencing the same thing but her eyes are pairing more often than our daughter’s.

  • Jason

    Sorry one more question, before surgery how far could either eye move outwards? Were they able to move past mid line? Thanks

    • growingupkemper

      I could talk all day about it so please keep the conversation going! Prior to surgery, she was never able to move her eyes beyond mid line. Neither one. It was even very rare for her to reach that midline point, let alone go beyond. That’s why it was so easy to diagnose her with Duane’s Syndrome because it seemed as though all signs pointed to that diagnosis. It wasn’t until our surgeon came along that we realized it was solely a physically limitation with her muscles being pulled too tight. Her muscles just wouldn’t allow for her eyes to move.

      • Jason

        Thanks for your responses and all of your updates. I’m sure your posts are helping more people than you may realize. It’s amazing that she now can fully mover her eyes. My daughter is similar except it’s affecting only her left eye. She has/had every symptom of duanes, except when we did a cover test with her lying on her right eye, she was able to move her left eye well beyond mid line. Now she can get to mid line easily with both eyes coordinated and some times beyond (really hard to catch.) I noticed in your 5 month update for Mya, her right eye appears ‘more narrow’ than her left. I’m confused how this is not be a sign of duane’s as Mya definitely doesn’t have it. My daughter does this some times as well, left eye, but everything I read online and based on your surgeon’s input it is an indicator. Let me know what you think. Thank you!

  • Jason

    Apologies for more questions, what symptoms do you see when you think Mya is favoring her right eye? No movement from her left when looking left? Thanks

    • growingupkemper

      No worries! Her left eye still has a tendency to turn inwards when she looks any direction. It’s like her left stops trying and her right takes over. It’s especially obvious when the surgeon is running tests on her that is using her right eye vs. her left. She still has a tendency to let her right eye do the focusing and her left will turn in. There’s a threshold that we were hoping she would hit that would be “acceptable” and we would just work with a therapist or continue using patches/glasses to continue strengthening. Unfortunately with Mya’s measurement post-op, she is still far from that number and we know that additional work needs to be done to force her left eye more centered so that her eyes will work more cohesively.

      • Jason

        Thank you! seems very similar to our daughter. Another question, when she’s using her right eye to focus does her left eye ever ‘narrow’? We are seeing this with my daughter randomly in all directions, I think it’s when she’s focusing with her right eye.

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