Today Emily went to the Ocularist and was fitted with the first trial prosthetic shell. I have been dreading this day, knowing it wasnt going to be easy. Bribes of donuts for breakfast, lollipops and stickers if she was brave and let the doctor put the shell in, or as we are calling it a "lens". She wore the "lens" for about 5 minutes, crying the entire time, saying it hurt and she didnt want it in. It is going to take time and practice for her to get used to wearing it, so we will be working our way up to all day wear, 5 min at a time. If she becomes more comfortable wearing it, we will increase the time accordingly. But the end goal is for her to have it in all day, only taking it out at bedtime. We will be using some numbing drops just before we put in the shell to help ease the discomfort. This is the trial clear shell. The final shell will be hand painted to match her "good" eye once the correct size and shape has been determined. My heart was breaking today just watching her cry and refuse to open her eyes while it was in. So this is going to be a very difficult and emotional journey for all of us.
It looks like a contact lens, but larger and thicker. I wasn't sure what to expect, and until I have tried to put it in, am still uneasy about it. I know she needs this, it will be necessary for the rest of her life. It will be a learning process...many tears will be shed. Both by her and Me too.
I hate this...i really hate this. Most days recently i haven't paid too much attention to her lack of vision, just being as normal as possible. But from now on, her left eye will once again be a daily reminder of how much her life is NOT normal. This is not the life I wanted for her. She will never drive. She will most likely need special assistance in one way shape or form everyday for the rest of her life. Her life will not be easy. And that breaks my heart every second of every day. She will be fine, adapting to whatever obstacles are in her path. She is and stronger than I will ever hope to be.
But today, she was a scared little girl, and i cant help but feel like the innocence of her childhood has been stolen from her.
I love her so much it makes my heart hurt. And as i write this, tears of sadness are falling because she doesn't deserve the life she is being forced to live...
Im very sorry to read your sad story about your daughter.our 11 month old son hayden has an under developed right eye and in a few weeks will have to have a prosphetic shell fitted to expand the eye over time to make it symetrical with his good eye.were dreading having it fitted.
ReplyDeleteHow are you all doing now, five months on? My children have a retinal condition, but we have been incredibly lucky so far, no detachments and very little traction. I feel for you, and your fight for her vision, it's the hardest thing watching your children suffer. I hope you have adjusted to the new reality. she's a beautiful girl, and looks so happy in the photographs! My colleague's daughter has a prosthetic eye, due to retinoblastoma in childhood, she's in her mid twenties now and a mother herself. If you want me to ask my colleague any questions about this, just email me! She would have had it a bit easier though, as her daughter was younger when the eye was removed.
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