Monday, January 3, 2011

CRCs Albinism and Eye Update

CRC waking up from her nap 1/3/2011
Notice her right eye{your left} still turning in.

Much better though, compared to the day of her surgery 3/17/2010

Miss CRC is 26months old now. Sometimes it doesn't seem like she's been here that long, other days I can't remember what it was like without her. She is such an entertaining, bright, easy going little girl. I'd have ten kids if it meant they were all exactly like her. You know, I think back to the weeks when we first brought her home and I wish I knew how smart she'd be today instead of worrying constantly about her eyes. I thought she was blind. I thought she'd never recognize me. I searched vigorously online to find a diagnosis for her symptoms, but came up short. I finally got that diagnosis when she was 4 months old. I still didn't know what to expect from my baby. Initially, I still believed she'd have learning disabilities because of her lack of vision, but I then learned that Albinism does not mean disability. It simply means lack of pigment. I finally realized my baby was just extra special!

We've been to Arkansas Children's Hospital every 6 months for the past two years. We will continue to go back until her Opthamologist says otherwise. She had surgery in March 2010 to correct her Strabismus, crossing of the eyes. It did work and she looked much  better. Her eyes were straight for a very long time. They still are when she wears her glasses, but not as much when she's not wearing her glasses{which is only when she sleeps and bathes} It started to become worrisome to me, but when we went back to ACH in November '10, her Dr. said that it is totally normal. He expects them to still turn in without her glasses because she is so far sighted, but he would only worry if they turn in with the glasses still on. That would indicate that the glasses are not strong enough. {I so hope this doesn't happen!} They are already so thick!

You'd think her lack of vision would impair so many aspects of her life, but it hasn't at all! She is so incredibly smart. It amazes me every single day. She can count to 15 without mistakes{even counted to 6 in Spanish yesterday!}, knows every single color and refers to objects by their color, knows the difference in boys and girls, and can talk in complete sentences. She speaks more clearly and more correctly at 26months than CDC does at 4.5years old! Strangers in public always ask how old she is because she speaks so well. Sometimes, I wonder if she speaks so well and remembers so many things because of her lack of vision, like maybe she depends on her other senses more since that one is lagging behind. Whatever the reason, she is such a blessing! I thought life would be so much more difficult with her when I learned of her diagnosis, but it has actually been the opposite. She makes life easier! I love my little Care Bear, Reesers, Reesy Peesy! :)

I've included pictures from the day of her surgery since I never did a blog post on it.
This was after the "loopy meds" She was so adorable!
 About to go back for surgery. She had the same surgery on both eyes. They had to perform the surgery because the left eye was in control. If he wouldn't have done the surgery, the right eye would have "died" so to speak. It would have just quit fighting to see and let the left eye take over and her right eye would never function again and be blind in that eye. She did have surgery in both eyes, though.The Dr explained it like a set of tires, you have to perform the surgery on both eyes like you have to balance both tires or it will be out of balance.
 Right after she got our of surgery. :( She had such a high fever!! The nurses told us it was probably from being bundled up in the blankets they had her in.
 The day after surgery. You can see how her eyes still look glossy.. We had to put drops in them for about a week to 10 days afterward. We could almost immediately tell a difference. So worth it!


  1. WOW! What a difference! Her eyes look great. She is such a cutie pie!