Tuesday, May 26, 2009

Developing Strabismus

Over the passed few weeks i've noticed that Carrah's right eye is developing Strabismus{crossed or lazy eyes}. Chris says it is just a lazy eye, but it's extremely crossed when she is trying to focus.

It is breaking my heart. That sounds so shallow, but I don't want her to have to endure any more taunting and cruel looks than she has to already. The initial diagnosis of Albinism was hard enough because I know how hateful little kids can be, but I have since accepted it. I'm so thankful for her and I think she is gorgeous with out without Albinism!! Of course, I will also think she is beautiful with or without Strabismus, but I want everyone else to be able to see passed it as well.

I'm calling the Ped Opthamologist at Children's today to see if they can make her an earlier appt. She is scheduled to go back in June or July{can't remember, they will send me an appt sheet} I'm not sure what doctors do about it, but I think I have read somewhere they can try a patch over the good eye to make the bad eye work harder or something. Or they may give her glasses..or perhaps even surgery. {Please if you are reading this, pray that is not the case} I do not want my baby girl going through surgery!!


Sunday, May 24, 2009

Developmental Milestones

When Carrah was diagnosed, I was terrified that she would not be able to live a normal life. I had no clue what Albinism was or what it entailed for her future. So many thoughts and visions ran through my mind. Would she be able to see to take a bite, crawl without bumping into things, walk down a hall, and so many more..?

My answer is yes! She has done several of those things and earlier than expected at that. Her pediatrician is amazed at what she has done so far. "Very advanced" is what she said.
*Wow* I thought. This little girl that the Opthamologist told me "probably will be able to find her own room" is seeing her favorite toys halfway across the room and pulling up and walking on her own. She can even spot her paci in a pile full of toys!

I'm so proud of what she has accomplished so soon and can't wait to find out what else she is capable of doing!

Crawling on April 1st @ 5mos old

Playing with her big sister on Apr 1st

Eating baby food on April 8th

Crawling again on April 15th {still 5mos}

Crusing on April 27th{6mos}

Just starting to walk in the walker May 5th

Walking in walker and Babbling on May 15th

Walking with a chair May 15th

Eating and Laughing on May 24th{7mos}

{Don't mind my hoarse voice here, I was sick.}


Thursday, May 21, 2009

Early Intervention

Though I do not know everything there is to know about Early Intervention, I know that it is a fabulous program that will benefit Carrah greatly.

I called them last week and they set up an interview for next Thursday, one week from today. I will update after the meeting.


Friday, May 15, 2009

Indoor Lighting

I am sure it isn't necessary to have special lighting in the house, but we have found that GE Energy Smart 15 WATT(=60WATT) Daylight 6500K bulbs are best suited for Carrah's eyes.

She keeps her eyes open and plays much more easily with these bulbs in our home. They show up in almost a blue tint and they become increasingly brighter the longer they are turned on. However, they do not get as bright as regular light bulbs, like I said they are a different color that is easier on her precious little eys.


Thursday, May 14, 2009

Sun Protection

One of the most important thing for Carrah's well being is that we take the right precautions to prevent damaging sun exposure to her skin as well as her eyes. People with Albinism have a much higher risk of developing skin cancer because of their lack of pigmentation.

Something that I noticed even before she was diagnosed was that she couldn't open her eyes outside in the sunlight, or even in bright indoor lights for that matter. The truth is the sunlight can be physically painful to her eyes. For this reason she wears UV protected hats and sunglasses while outdoors.

My favorite UV protected hats and sunglasses so far have come from a company called Coolibar Quality Sun Protection for LIfe.

Carrah is not the biggest fan of hats, but I continue to put them on her in hope that she will get used to them one day.

Another HUGE importance is sunscreen. I have bought more sunscreen in the passed 3 months than I have my entire life. I'm trying so many different products looking for the perfect one. So far my favorite is Coppertone Water Babies Sunscreen SPF 70+

I also tried Banana Boat Ultramist Sunblock Continuous Lotion Spray, Babies Tear Free SPF 50 and hated it! Not that it is a bad product, but how are you supposed to spray sunscreen on a baby? LOL! It was the hardest thing ever. Now for when they're a little bit older, probably a great product!

Doing these things may be a hassle, but it only takes a few minutes to protect her from those awful and damaging sun rays!


Wednesday, May 13, 2009

From the Begining

Carrah was born in October of 2008 at a healthy 7lbs 4oz with the whitest hair I had ever seen on a baby. Everyone commented on it, even the nurses, because they had "never seen a newborn with such white hair" I sort of shrugged it off because even though my older daughter Cami was born with black hair, myself and my husband had white hair when we were kids.

When Carrah was around 4 weeks old, I started noticing little things that bothered me about her eyes and I brought my concerns up to my family, who told me I was a worry wart. Everyone told me to wait until she was 3-6months old to tell for sure if something was wrong, so I tried to let it go. But around 7 weeks of age, she would not look at me. I would get right in her face and she would never look into my eyes! I thought she was blind. My heart ached, my stomach was in knots because I was terrified that my beautiful new baby would not be able to see not only the world, but me, her moma! She wouldn't track objects, like toys and her eyes would "bounce"{as I called it} back and forth over and over again. I later learned this is called "Nystagmus."

When I took her in for her 2 month check up, the nurse practitioner told me nothing was wrong. "Oh her eyes just haven't focused yet. Wait a little while longer." I was NOT happy with her response. A couple weeks later, my daughter Cami was sick, so we saw our regular pediatrician. While I was there, I asked her to look at Carrah's eyes and she said "Hmm..something just isn't right is it? She won't focus on anything." Thank goodness, I thought. Someone is finally listening to me!! She set me up an appointment with an Optometrist.

We saw him and as soon as I walked in the door he said "Does Albinism run in your family?" Um..what? I thought, but then I managed to say "No. I've never seen anyone with Albinsim." (The reason I knew what this was, was because my mom and I had been fervently searching online for what may be wrong with Carrah and Albinism had come up. My mom said "No, she can't have that because her eyes aren't pink" and I agreed, so we left it at that.) He said "let's do some tests." so we sat there while he did all sorts of tests on Carrah's eyes. The conclusion was "Ocular Albinism and maybe Optic Nerve Hypoplasia" We were then referred to Opthamologist at Children's.

Went to the Opthamologist in February when Carrah was almost four months old. They did more tests. The diagnosis was "Oculocutaneous Albinism" with NO Optic Nerve Hypoplasia (thank you God!) The other eye doctor thought she may have ONH because he couldn't see the Optic Nerve behind the eye, the reason he couldn't see them was because she has almost no pigmentation behind her eyes, making it hard to see the nerves. While at Chldren's, the Opthamologist had two other doctors come in for a consult on Carrah because it is so rare. The other two had never seen an Albinism case at that hospital.

So there you have it. We must now keep hats, sunglasses, and sunscreen on our beautiful little CareBear. Her skin and eyes are extremely sensitive to the sun! It must be taking very seriously.

Moral of the story: TRUST your MOMMY INSTINCTS!! I knew something was not right with my baby girl when no one else believed me. Thank the Lord it was nothing life threatening, but I'm so thankful we found out as soon as possible.

Now I'm in the process of finding Early Intervention classes, many many UV protected products, as well as other things.


Tuesday, May 12, 2009

My Mission for Albinism to be Correctly Understood

I'm creating this blog for my beautiful daughter Carrah Reese, my CareBear. She was dianosed with Albinism when she was almost four months old. It is a genetic disorder that is caused by a defect of Melanin, that produces little to no pigmentation. It affects 1 in 17,000 people all over the world. No particular nationality is at risk. It can happen to anyone anywhere that BOTH parents carry the Recessive Gene. Everyone with Albinism will have some form of Visual Impairment to varying degrees. They will neither be automatically Deaf nor Disabled.

My daughter has Oculocutaneous Albinism. We are not sure which form yet, but we could see a Genetecist to determine that.

This is what NOAH says of the Genetics of Albinism:

The genes for OCA are located on “autosomal” chromosomes. Autosomes are the chromosomes that contain genes for our general body characteristics, contrasted to the sex chromosomes. We normally have two copies of these chromosomes and the genes on them – one inherited from our father, the other inherited from our mother. Neither of these gene copies is functional in people with albinism. However, albinism is a “recessive trait”, so even if only one of the two copies of the OCA gene is functional, a person can make pigment, but will carry the albinism trait. Both parents must carry a defective OCA gene to have a child with albinism. When both parents carry the defective gene (and neither parent has albinism) there is a one in four chance at each pregnancy that the baby will be born with albinism. This type of inheritance is called “autosomal recessive” inheritance.

Ocular albinism (OA1) is caused by a genetic defect of the GPR143 gene that plays a signaling role that is especially important to pigmentation in the eye. OA1 follows a simpler pattern of inheritance because the gene for OA1 is on the X chromosome. Females have two copies of the X chromosome while males have only one copy (and a Y chromosome that makes them male). To have ocular albinism, a male only needs to inherit one defective copy of the gene for ocular albinism from his carrier mother. Therefore almost all of the people with OA1 are males. Indeed, parents should be suspicious if a female child is said to have ocular albinism.

My Goal {taken from my home blog}:

I had no clue what Albinism was before Carrah was diagnosed. Yes I had seen pictures, heard stories, watched television shows that portayed Albinism, but none of those things were accurate. It pains me to see these Hollywood writers, producers, directors and whomever else paint such a incorrect picture of the beautiful community of people with Albinsim.

Some may say that i'm overreacting and that you cannot change the movies. They tell many untruths on television and the big screen, but this one hits close to home. My baby girl deserves the best! She deserves for people to be educated and know the truth rather than only hearing the lies and misinterpretations. It should be something that is more studied and learned about. Her pediatrician and my own doctor didn't have half a clue as to what Albinsim really was. That is unacceptable! They are doctors! This should be something that is studied and known.

I want the truth out there so that people who hear the word Albinism associate it with what it really is. A defect of melanin, which results in little or no pigmentation. And that it comes from a recessive gene in BOTH parents. It is not something that is life threatening, it does not make her weird or a mutant, it does not mean she will be deaf or have learning disabilities, it is simply a lack of pigmentation in her eyes, skin, and hair

There is so much information that I want to share. I will do the majority of it through posts, but I will also try to set up some pages and links on my sidebars with helpful information.

Please do what you can to spread the correct information about Albinism. Stop the hurtful judgements. This is what Albinism really is.

One Week Old
Six Months Old


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