Care Bear Opthamology Appt 4

We had to take Care Bear in for her fourth Opthamology appointment at Children's. It was another scheduled routine visit. Both C and I were anticipating this visit as the visit where they'd schedule "the surgery."

We were right. I'm not sure if that's unfortunate or fortunate. It is fortunate because she needs it. Her poor little right eye is slowly failing. It's lagging behind the left eye quite noticeably. Last time we were there was in October and both eyes were equal, but now, three months later, her left eye is much stronger. It is unfortunate though, because I don't want my baby to have to undergo surgery. It's such an intense feeling of anxiety and it's still 2 months away.

I've waited for this day, for when they told us she needed the surgery because I want her to have it. I don't want her eyes to continue crossing and have even more reason for hateful kids to pick on her. I don't want her to lose vision in one of her eyes. However, I also don't want her to have to be put under with anesthesia. {sad face}

They gave us more patches {sigh} and this time they sent us home with Teragard tape that you put on top of the patches so that she can't rip them off as easily. Oh and if that doesn't work,they sent us home with arm braces that won't allow her to reach up and pull the patch off. Cruel much? I know.. right? That's what I thought, but if it helps to strengthen her right eye, I will do it.

For some reason, i'm emotional today. Everything sort of hit me hard. I'm excited to start a new chapter of my life, but at the same time on days like this when CB or MP need both of us, it's difficult to think of what you'll do at the next visit. Will we be there together? Will we still be on friendly terms? I hope so. For today though, we were. It was all about CB today. Lil princess as one of the nurses called her.

Stinker. She was so good through the entire process. They had to dilate again and that is just terrible for a 14 month old. Especially one who is already sensitive to the sun. She couldn't even open her eyes in the car, but she was a trooper and decided to just fall asleep. {smiley face}

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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.


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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! =)

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National Adoption Month

As I mentioned some time ago, C and I have been discussing adoption for a while now. Initially we decided that we wanted to go the Domestic Infant Adoption route. C really believes in helping all of children here in America that need homes {as do I} However, i've recentley learned of all of the orphans/waiting children overseas that need not only homes, but also forever families to love and care for them.

I've been searching through all of the waiting children lists and it truly breaks my heart to see their gorgeous faces sitting there , just waiting on someone to take them home. I found a little boy , Care Bear's age, with Albinism that I fell in love with as soon as I saw his picture. However, I learned that he is from China and their laws striclty state that you must be 30 years old to adopt a child. We all know that I am nowhere near 30, i'm 23. That broke my heart. I pray that he finds a forever home. It was obvious that wasn't God's plan for us. But He does have a plan for us and I cannot wait to find out what it is.

For now, we obviously cannot adopt from China or any other country{other than USA} because most require a minimum age of 25 years old. I realize I am quite young, but I know where my heart is and I want and feel a need to save these children from a life that no child should have to endure. C is onboard with adoption. We have disucssed it very much and I pray every night about it. This isn't a spur of the moment decision. It has harbored much thought and prayer. It will happen when God decides it is right.

As for today, I have found an adorable little boy named "Walter" from China at the Philip Hayden Foundation that C and I have promised to sponsor. We will receive updates on him periodically. We can send him care packages and other things that let him know our family cares about him. It's just a small thing, but Lord willing it will make a giant change in his life. If anyone knows of any children with Albinism that need sponsoring, please let us know!

We are still looking into adopting from the United States. Yes, we are broke, but I feel that if it is God's will, the money will come..some way..somehow.

November is National Adoption Month. If you have a minute, take the time to look through the Waiting Child list at RainbowKids.org or just say a prayer for all of the children all over the world who need a family. They need them.

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"My Teacher is Gonna See Her!"

Care Bear always wakes up early! I try to get up before the girls and get stuff done, but it never seems to happen. No matter how early I wake up, she is either right before or after me. This morning it was about 7:00am, so not to bad really.

I changed her diaper, dressed her, and came downstairs to make breakfast. Miss Priss was still asleep, of course. I decided to patch Care Bear's eye this morning since she is usually in a pretty good mood. She didn't mind at all and just sat there while I did it. Then, she took off walking and clapping like it didn't phase her a bit.

Miss Priss woke up and came down the stairs, sat down in her chair then called for Care Bear. When she saw her, she burst into tears.
"Why you do that for moma?"
I said because Care Bear's doctor wants us to. It will help her eyes."
"No!! I don't want that on my baby. My teacher is gonna see her."
"Miss Priss, will you teacher not like that?"
"No. She will be mad too."

I almost cried too. That was the hardest part so far. I know it seems like nothing and almost funny, but it's just difficult to explain to a three year old that her sister's eyes are a little different and need some assistance.

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She Pulls it Off

Miss Care Bear was fabulous at her appointment today. She played well with the Optician and Opthamologist. I think she is just used to the visits by now. It's normal for people to shine little lights with toys hanging off of them into her eyes. She enjoys the Barney stickers they reward her with as well.

We learned a few things while we were there, though the visit was surprisingly short and quick! Care Bear still has a lot of Strabismus {crossing} even with the glasses on. It's not nearly as noticable with her glasses on, but it is still significant enough to be concerned about. Dr. P wants her to "Alternate Patch" until January.

She has to wear these "cute" little patches for 1-2 hours per day on alternate eyes each day until January. When we go back in January, if there is still the same amount of Strabismus, she will need surgery.

The reason for surgery is that if she continues to favor the left eye, the brain will cut off the right eye. What I mean by that is, the brain thinks since the left eye is stronger, it does not need the right eye anyway and will quit sending information to the right eye, causing it to lose the current vision it has now. We don't want that to happen!

So..for the moment, we will wear the patches and pray that it helps some. I have a feeling that it will not change much because her Strabismus is so severe. Surgery is most likely our next step and that is fine as long as out little girl can see.

Personally, I think she pulls it off..the look that is. We'll see within the next hour if that statement can be applied literally. ;)

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My Review of the 20/20 Albinism Story

I was pleased with the first thirty minutes of the show. I think they gave a lot of accurate and helpful information.

The very first story about the baby with Albinism immediatley brought tears to my eyes because that has been my life for the passed year. Everything they said was like it was coming from my own mouth. That sweet baby girl looked so simiilar to my Care Bear and it just really hit home hard. It's a devistating diagnosis as a parent because you know your child is going to live with this condition for the rest of their life. Just like the model with Albinism said, "A lot of people outgrow things, but you can't outgrow Albinism" That's what goes through my mind every day.

To see this show and hear other's stories that are living with this condition is numbing. The little boy that said people pick on him and call him names, the girl that spends 20 hours alone and said people try to trip her while walking down the halls. That's the cruelty my daughter is going to have to endure one day..or possibly every day.

As I sit here, tears still streaming down my face, I think about my beauitful little girl that deserves as much equality as every other child and I just pray that she receives it. I know how cruel the world can be, especially to someone who looks a little different. It's so hard as a mom, I think because I just want to protect her and I know that I can't forever. It makes me so angry watching this show that I feel like i'll go ring some little kids neck if they mistreat my baby! I don't know if it will ever get easier. But for now, i'm so very happy they aired this story and i'm so thankful that so many of you have watched it for Care Bear and all the others out there living with Albinism.

Now for the Tanzania part. That was horrific and so incredibly inhumane. I had to quit watching because it made me nauseous. I can't even imagine and I don't want to. You can sign a petition that will be delivered to the Tanzanian govt here

Remember to think about this story and the real people it involves next time you make a joke about being "Albino" or you see someone who looks different. {not that any of you do..i'm just saying}

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Albinism on the News!

Most of you that read my blog know that my Care Bear has Albinism. Which is a genetic condition resulting in little to no melaning, resulting in little to no pigmentation in the eyes, skin and hair. Not many people can tell by looking at her and most people don't even believe us and tell us to get a second opinion. But she does indeed have it and if we ever were to have more children, we would have a 1 in 4 chance of them having it as well. Miss Priss was not the 1 in 4 obviously.

Anyway, there is going to be a story on 2020 tonight covering Albinism.

I'm not sure of the specifics, but I think the main story is about the horrible killings of people with Albinism in Tanzania. It is their belief that people with Albinism should be killed for their body parts to use as witch craft. Disgusting right?

Please watch this story if you get a chance! You will learn a lot, i'm sure. I'm so very excited that they are airing this tonight. It brought tears to my eyes because the media tends to ignore Albinism as a medical condition and people continue to sterotype. Not many know the truth about Albinism and I pray this story tonight will bring much awareness!

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