The past two weeks we have been struggling with Leo's eyes again. He has "active" abrasions in both eyes and the three doctors we saw the past week are all recommending a bi-lateral tarrsoraphy...what is that? They will sew the outer corners of Leo's eyes 1/3 to 2/3s shut. This will protect Leo's eyes from further abrasions and promote healing of the current ulcers. The latest abrasion is in the center of his good eye and will cause some permentent vision impairment. Something as small as a piece of fuzz scratches his eyes and the abrasion does not heal because his eyes are always open and his nerve endings are absent so nothing signals his brain to start the healing process. At least in the short term this is our only option. The procedure will be permanent for now but it is easily reversable if technology or Leo's health change in the future. Surgery was going to be tomorrow at Methodist hospital in Peoria but they called me today and said Leo was too complicated for them to sedate so we are rescheduled for next Thursday at his normal Children's hospital in Peoria.
The whole thing hurts my heart. I'm going to miss those adorable big blue eyes. I can't believe we are letting this happen to our little man. I told his nurse about it today and she insensitively pinched the sides of her eyes together mocking what he will look like and said what do they expect him just to walk around with his eyes practically shut....I replied well basically yes...this is our last resort to protect his eyes. She wasn't trying to be mean but it just wasn't a good thing to say. We will take it day by day. Like all the other bad news I'm sure we will quickly adjust to this and embrace the new normal. I just wish "a new normal" could move in a positive direction for once!
We took Leo on Tuesday to have his new hearing aid made. Let's pray that in 3 weeks when it is delivered, he responds and a whole new world is opened up for him!
1/3 to 2/3 is significant :( I'm sorry to hear this news but I know you are all doing what's best for him and he is fortunate to have these options. I like the idea of technology and his health providing some open doors in the future. One day at a time, one procedure at a time, and prayers to match each.
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