Arwen has had an alternating strabismus, which means that she would alternate which eye she was using to see. Since her eyes were seeing everything at different angles, her brain was getting different pictures of the world from each eye, which causes double vision - and makes it even hard to learn!
To accommodate for this, she would use the picture from one eye and the other eye would turn in because she wasn’t using it at that moment, and then vice versa. The doctor had us try on glasses that mimic how Arwen was seeing the world with her eyes turned in, it was very confusing - everything had a double, and I almost instantly had a headache.
Arwen's eyes are and always have been fine, but her brain wasn’t communicating to her eyes typically. Also we’ve been to two different ophthalmologists since Arwen was born in Jacksonville, but over time it was clear that they doubted if Arwen could even see. Her MRI from a week old shows that her vision center in her brain was damaged very badly, it’s almost non-existent. But it’s always been clear to us that Arwen can see.
Over the last year Arwen was using her vision more and more consistently, and not just at home. When we got the Tobii Eye Gaze device, I didn’t even have to question myself any longer! She was using her eyes to play games and identify pictures of her family to say hi!
A video of her playing and using her eye gaze (failed to convince) her ophthalmologist locally, and that’s how we found Dr. (Lawrence) Tychsen in St. Louis. He specializes in correcting strabismus in children with cortical vision impairment.
From the moment we were in his office he said, “Well, of course she can see. That’s not even in question in my opinion.” And after her diagnostic testing he concluded she actually sees really well!
During surgery, the doctor loosened her inner medial rectus muscles on both eyes to position them straight on. This will help her binocular vision develop so her eyes can work and see together. She doesn’t need glasses anymore, and her processing time is only slightly slower than normal. Typically when you see something, it takes about 1 millisecond from the time the image hits your optic nerve to when it’s processed in the visual center of your brain. Arwen’s processing time is about 70% of that. (It) will probably start to get faster as her visual world is less confusing.
Her dental work was easy in comparison. Her enamel was gone on her four front teeth (due to) high doses of steroids for infantile spasms, which are rare seizures seen only in infants, for three months as an infant. She’s also been on seizure meds since 8 months old, so her front four teeth were stained and had some pits as well. Since she was already going to be under anesthesia (for the eye surgery), we arranged with a dentist at St. Louis Children’s to do four crowns on her front teeth and then preventatively seal all her back teeth. Kids with Cerebral Palsy are prone to dental issues, so hopefully the sealing will prevent future problems.
Through our whole journey thus far, God has really directed our steps and opened and closed the right doors. It’s often overwhelming to manage and need to educate yourself on so many new therapies, surgeries, but it gives me such peace knowing God is in control.
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