In March 2016, Elsa had eye surgery. I won’t bury the lead, as they say in the newspaper industry…
The results are crazy good.
We have patched her eyes on and off for several years to address drifting. It seemed to work for a while, and then around age 3, not so much. Especially when she was super tired, her eyes would go really silly — drifting far, far off. See the “Before” pic below. The result: Elsa was not getting one picture of the world around her, but two. Can you imagine? Two moms and dads, two spoons coming at you (when you don’t want to eat anyway!), two floors beneath your feet, when you try to walk. It would be enough to make you lose your mind.
For these reasons, we always knew a procedure would likely be needed. Our ophthalmologist has been recommending it for about 1.5 years. We put it off and put it off, not wanting her to go under the knife unnecessarily. Yet, the results were amazing. So much so that part of me wishes we’d done it sooner. But a key to the success of the procedure is that the surgeon moves (loosens) the muscles to where they need to be, then it’s up to the brain to make it all work. If we had done it earlier (during a period when Elsa’s seizures were frequent), her brain might not have been up to the task. Who knows? Either way, I’m glad we did it, at last, this spring.
- Her diagnosis (which I have to look up EVERY time): intermittent extropia and inferior oblique overreaction, in both eyes.
- The procedure needed: lateral rectus recession and inferior oblique recession, in both eyes.
Our ophthalmologist warned us, we might NOT want to go on YouTube, and look at procedures in progress. It’s true, it’s not for the sensitive stomach. The doc cuts into the eyeball, then goes under the surface of the eye to tug (eeeeeeee) the muscles to loosen them. I about lost my supper when I watched. But I felt like I needed to see what was going to happen to my baby.
Recovery took a while, I think a full month before the stitches in the eyeball fell out and redness in the eye subsided. But the before and after… I’ll let you be the judge!
Before (she’s very sleepy here):
After (ignore the sneezing sister):
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Wow!! Paige also needs eye surgery. Her doctor wants to do it at the 15 month mark (which is about two months away). Yikes! She has astigmatism in both eyes, but the reason for the surgery is because both of here eyes “float.” He didn’t give me the exact name of the condition, but I’m guessing similar to Elsa’s because her eyes look like Elsa’s before picture AND it gets worse when she’s tired as you described.
PS. Love the matching sister jackets!! Adorable! Girls are so much fun!
Thank you so much for posting this wonderful update on Miss Elsa! I hope to get to meet her later this summer
I have three Pink Ladies on my hands, Keely! :o) Yes, we must meet up this summer! Please keep us posted on how you guys decide to move forward with Paige’s eyes. Happy to provide a doc referral. As you can tell, we were very pleased with the results. It’s likely that the surgery will need to be redone, if/when her brain and eyes stop communicating again. They told us this may be in about 5 years. It’s not a permanent fix, but so important to her cognitive and physical development. Talk soon!
Amazing! My Ava will be getting surgery in July to correct her drifting. You have calmed my nerves about whether or not I was making the right decision for her.
I never noticed a problem with Elsa’s eyes in any of the photos you posted previously. The before photo is the first that captured it. You are an excellent photographer. Elsa was adorable before and she is still adororable. The successful surgery is a an amazing bonus. Three ‘pink ladies’! How do you do it? I don’t imagine you get much down time.
Shaina, I’m praying all goes will for Ava. We will be thinking of you guys. Surgery is always scary. For us, we ultimately decided to do it because we thought it would give her the best chance of pulling everything around her together. So far, her focus and attention (especially to people) are much improved. And her motor accuracy has somewhat improved too, as has her hand grip. That may or may not be related. Will keep you posted! And hope to hear about how things go for you all, too.
Thanks for your note Shirley. I always want to put Elsa’s best foot (or in this case, best eyes!) forward. And I’m sure that in the past, when choosing photos to post, I’ve chosen ones where her eyes looked good. Over the past year, however, our ophthalmologist gave me the homework of photographing Elsa’s eyes specifically when they were drifting substantially. He warned me not to only take and show him “good” pics — that this is not the info/data that will help him and his team ensure a successful surgery. As I was collecting data for him, I was inadvertently compiling evidence that convinced me of the surgery’s necessity. The one that I posted above was extra drifty. She was so tired that evening! Elsa was beautiful before the surgery, and is beautiful after. Couldn’t agree more! And all children with WHS share this beauty, regardless of how well their eyes are focusing. Downtime is a rarity, this is true. I think that’s why I stay up pretty late at night, just to have some quiet time to pull things together again – mentally, physically. But I know that I am blessed beyond measure with three girls to love and hang out with every day.
I worked in ophthalmology for over 16 years. Initially as a technician, then as a private surgical tech. It seems like a very invasive surgery and it is, but the benefits definitely out-weigh the cons. I loved my job and worked literally up until 2 days before I had my Nathaniel. Unfortunately, I wasn’t able to return to work after he was born. He too has had muscle surgery and and still has some wandering, but luckily glasses help….although, they usually wind up in his mouth 🙂 She looks great. So glad to hear she’s doing so well.