Thursday, November 12, 2009

A Composition of Care Bears Journey to a Diagnosis

Here is a composition of some of the posts I wrote during the first few months of Care Bear's life, when I was desperately trying to figure out what was "wrong" with my baby girl.

I had a gut instinct that something just wasn't right with her eyes. Nobody believed me, not even my family, but I continued with my search and finally got our pediatrician to refer us to an Optomestrist, who later referred me to an Opthamologist at Children's Hospital.

When we learned the diagnosis, I felt that I could exhale. Finally, when my baby was four months old, we had an answer and it wasn't the awful one that I was preparing myself for. She had Oculocutaneous Albinism, a lack of melanin resulting in lack of pigmentation in the eyes, skin, and hair. She is a unique little thing. 1 in 17,000 people have this condition. It is a genetic condition passed on from both parents. We have a 1 in 4 chance with every pregnancy and she happened to be that one. THE One for us! =)

Post from December 13th 2008 titled "A Few Concerns (Care Bear)

Not sure why i'm worried, but it's just an eery feeling i've been having.

Care Bear doesn't really make eye contact or smile. She has smiled a few times, but rarely ever. She is most always crying,s leeping, or just sitting there. She doesn't like the swing or the bouncy seat. She doesn't like to be laid down, she only wants to be held.

I know Miss Priss was smiling all the time by this age and she was making eye contact with me all the time. She would look at me when I talked to her and just smile, but Care Bear doesn't. She will stare at me while i'm giving her the bottle, but never smiles while looking at me! I'm so worried that something may be wrong with her! :(

Anyone have any advice? I read somewhere to not worry about their eye contact until around 3 months, but I can't help but think twice.

Post from December 21st 2008 titled "Not Sure.."

if i'm ready to open up and talk about this, but I just want some input and thoughts.

Care Bear cannot see. She may be able to see a tiny bit because she responds to light and moves her head and eyes *like* she is looking, but i'm pretty certain she can't actually see.

Obviously, i'm heart broken, but I know that God gave her to me for a special reason. I love her so much already. I instantly bonded with her, whereas it took me a very long time with Miss Priss.

I'm so sad that she cannot see me. Every once in a while, when i'm giving her a bottle, she seems to be looking right in my eyes, but the next second she is back in her own world.

The happiest time for her is when she is laying on her changing table. There are two canvas pictures hanging on the wall that I could almost swear she sees because she gazes up toward them and smiles.. every single time we change her diaper! But that's pretty much the only time she's happy. She never really smiles. However, she does coo and "talk" a lot.

It brings me to tears to even type this, but I just wanted to let you know why she is sort of always "off" in all of the pictures of her. I think she is beautiful and otherwise healthy. I will be taking her to the pediatrician about it soon to see what she thinks. Until then, please pray for my baby girl and our family. It's a really hard time right now, especially for me. I'm beginning to find peace with it, but I just want her to have the best life possible.

Post from February 5th 2009 titled "Diagnosis" I'm not posting this entire post because it was a completely inaccurate diagnosis!!

Well, Care Bear's eye diagnosis is not the best, but she CAN see!{that's a blessing within itself!}

She has Optic Nerve Hypoplasia and Ocular Albinism {updated: We NOW know that she does not have ONH or OA, she actually has OCA Oculocutaneous Albinism}

Post from February 16th 2009 titled "What We Know Now"

We took Care Bear to the Opthamologist at Children's and he confirmed that she does have Albinism, but it's Oculocutaneous rather than Ocular. She is lacking the pigment in her skin and hair, as well as her eyes. He doesn't believe that she has the ONH , but that the pigment behind her eyes is so light that they weren't able to accurately see the nerve. She stil has an MRI scheduled to rule that out. But she definitely has Albinism. And she can definitely see! :) He said he thinks of vision on three levels.
1. Functionability, such as walking out of the bedroom down the hall.
2. Interacting with other children and going to school
3. Driving
He said he is fairly certain she will be able to do 1 and 2 with no problems, but driving will have to be determined as she gets older. We also take her back in 4 months to check her vision. He said we should know about how she sees by a year old. Also to watch her over the next few months and see if she is better. That's the good thing. Albinism can't worsen over the years, but it can improve as the brain matures.

As for right now, she is doing great! The jiggling eye movements {known as Nystagmus} have slowed tremendously and she is grabbing for toys, everyones faces , and her feet. She's just perfect to us :)

The hardest thing is flash photography. Her pupils turn out read from the flash. I know the reasoning behind this, but I can't explain it now. Even when she looks up at light, her pupils appear red.


Now, we all know how this turned out. GREAT!!! Praise the Lord for my little Bear with Albinism. I've learned so much from her sweet little self. She is amazing and never lets her lack of vision get in the way of what she wants to do. As i'm typing this very moment, she is peering around the computer watching me type and pointing to the picture saying "Momma!" {hehe} LOVE this baby girl!!!!!
Me & Care Bear then and now! =)


Bren November 12, 2009 at 7:00 PM  

I remember reading some of those posts. She was (and still is) such a precious little thing! I love that first picture! I'm so glad she has her little glasses and can see and am really hoping the muscles in her eye(s) get stronger and stronger!

amywelborn November 12, 2009 at 7:42 PM  

She seems like such a Sweet baby girl! I'm glad the diagnoses got better and better! You are such a good mommy! Love the picture of the two of you!

Kayci November 13, 2009 at 9:30 AM  

KC - I remember all of those posts...and I remember crying when I read them because I couldn't imagine what you were going through! I am so glad that you found out what was "wrong" with her and I am so glad that it wasn't any of the HORRIBLE thoughts that you were having. CB is such a beautiful little girl and filled with so much happiness. And I want to say what a GREAT Momma you are for not giving up and not letting anyone tell you that you were overreacting...Mommas always know!!

Ally November 13, 2009 at 10:10 AM  

You guys have come a long way!

Taylor November 13, 2009 at 12:57 PM  

Wow you are such a strong mom! She is so beautiful!

connie November 14, 2009 at 9:21 AM  

I hope you know that I absolulty admire the stregnth that you have as a mother. Your girls are lucky to have you and because of you they will grow up to be strong womaen and mothers a well. You and your girls are beautiful on the inside and out.
I am glad I have been able to get to know you through your journeys and will keep reading your blog because it is simply wonderful.

Marci @ All Things Wonderful November 16, 2009 at 2:26 PM  

Such a sweet post. Thank you for sharing it with us. Your girls are precious and they are blessed with a great Mama!

louise51 November 17, 2009 at 2:51 PM  

Hi my names Louise and i have a 10 mnth old daughter called Poppy who has albinism. Your little girl is absolutely gorgeous and she is a god send. My we girl has pink glasses to and their so cute hope to hear back from you my e-mail is

Tif P. April 15, 2010 at 4:13 AM  

Aw KayCee, I can't believe how time flies, Care Bear is so beautiful and wow our may 06 girls are getting so big. I think of u often and hope all is well. (((HUGS)))

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