Yesterday I was a little on the sad side so I decided not to post an update. We took Butterfly Girl for a second opinion in regards to her vision. Not because we don't trust the eye doctor we see, but because we just wanted to know we were giving her the best quality of life and that they agreed with our current doctor. A tiny piece of my heart wished that they would say she had perfect vision. That she could see and our other eye doctor was crazy.
As you can imagine her eyes were not perfect. She still has CVI. She still can only see some of the day and not others. Based on calculations from the VIT and the eye doctors she sees any where from 10-20 perfect of the day. It was a blow to my heart. Why? I knew it was coming. It was a blow because I had gotten my hopes up. It was a blow because after 6 months of knowing something was wrong with her vision it isn't any easier then it was then. I cried. I cried lots. Its hard to know your child will have to live with a life altering condition their whole life.
Then something I was not expecting happened. Butterfly Girl is farsighted when she is able to see. We were told that her farsightedness is getting worse. This is not something we wanted to hear. That means when she does see shes seeing worse and worse pictures. This eye doctor did tell us to use the glasses all the time unless she is sleeping. If we use the glasses that gives her the best quality picture when she is seeing throughout the day. In turn this gives her a better quality of life. So while this is a blow to my heart again, I know that she will have a better life because we saw this doctor. She will have a better life wearing glasses even when she can not see.
Please continue to pray for us. This journey is hard and long. It is never over. It will never leave us. We can not just jump off and say we no longer want to be on it. We need to follow this path. We need to see where God is leading us. We need prayer. We need support and well wishes. Thank you to those who read our blog. Thank you to those of you who pray.
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