Tukia was born with third nerve palsy in his left eye, where 4 of the 6 eye muscles do not work. The eyes were also misaligned (strabismic amblyopia), where his left eye faced out and down. He cannot move his eye in, up or down, the eyelid does not work (Ptosis), and the pupil does not react normally to light.
We had to start patching right away. He had his first Ptosis surgery at 6 months, where they raised the eyelid by inserting a “sling” which is a rubber band type thing that lies across his upper eyelid, and is attached to the top of his eyebrow and forces the eyelid open above his pupil.
He has worn glasses from when he was a year and a half, and he has been patching continually as well. Before he was four, he’d had two ptosis surgeries and two strabismus surgeries to realign the eye straighter, and help him use the eyes together better.
Tukia is 6 now. The patching has progressed from daily down to 2 days a week which is where he is currently. His vision is good in both eyes, and the eyes are seeing pretty well together. We use eye gel each night because his eyelid doesn’t close completely and it shouldn’t get dry. I am amazed at how his look has changed with these surgeries. We anticipate more ptosis surgeries throughout his life, as the slings wear out over time. But for now, he is in a great place. I am constantly reminded by his doctors that his improvement and huge progress in his vision is mostly due to the consistent patching.
The glasses have never been an issue, but the patching has been a struggle at times. I am not above bribes with him. We have had to deal with people (kids and adults) staring, pointing, and asking questions about his eye- sometimes nicely, and sometimes rudely.
I have used eye patches from Ortopad, which are bold and colorful. I have found with Tukia, that letting him choose the patch and choose the days each week he will wear it, has helped him have a little control in the matter. I have also made a book about his eye surgeries for him, and we read it frequently so he can see the journey and his own transformation. He also gets to ask the doctor EVERY VISIT if he can stop patching. He has been told no each time so far. But hopefully there will be a time in the near future, where he hears “yes, you can stop patching.”