Friday, June 27, 2008

Cambria Update- genetic doctor

We had the appointment with the genetic specialist yesterday and everything went well. The doctor basically talked with us about her condition and answered our questions. He did one thing to check for albinism and that was to look at her nipples, a little strange but sure enough she lacks pigment in her nipples- who would have thought? He was a wonderful doctor who has seen many cases of Albinism. A few things he explained was that she does have Ocular Albinism (OCA)- which is what we assumed- and that she would face challenges with her eyes but otherwise would be normal. He said her eye sight would probably 20/200 and at worst 20/400 (which is legally blind), but she should be able to function well with glasses. Much of what he talked to us about we had found on the internet, but it was nice to see that our research on the internet produced good information. He explained that her eyes see one object at separate times, because of the nerves being routed the wrong way to her brain- of course he said this in much bigger terms. This was confusing to me, but Kyle's explanation helped me understand- if a normal person's eyes are like 2 video cameras with 2 power sources working together, Cambria's eyes only have 1 power source and can only see one at a time. This is why she crosses her eyes, he says it is important to treat this or the brain will just shut down one eye and it will become lazy and not usefull (this is what the glasses are for right now). We have seen this very clearly lately, she looks at things with her right eye and when you try to look at her left eye (or give her an object to look at) she turns her head to try to focus with her better eye. He said that surgery is often performed to correct this, but will probably not happen for another year or 2. I know this all seems sad, but it isn't this is the way God made her and we are so blessed to have such a precious girl. There are so many other conditions that so many children face, we count our many blessings. The one question we did have was how this would effect any future children- we plan on having one more. We knew there is a 1 in 4 chance of our next child having abinism, but we didn't know if it could be any form of albinism or if the form Cambria has would be our only possibility. We had already decided it didn't matter, but we were of course curious. He said that the way the genetics work would produce the same form of albinism if it were to happen. It is amazing how rare this is and how it could possibly happen to us, what a special little girl. I know many are praying for a miracle and that would be wonderful to see, but know that God doesn't always choose to heal and He is a Great God who often chooses to Use and work through His special children! We are at peace and have been from the begining with what God has placed in our hands and we can't wait to see HIM work through Cambria! Thank you so much for all your prayers, we have felt surrounded by God's love an peace throughout this experience and your prayers have lifted us up and encouraged us in so many ways. Please continue to pray for Cambria and her great desire to take her glasses off, teething has made this very difficult and she just wants to chew on them- she doesn't even have a tooth yet, this is definantly going to be a long road ahead. Another difficult thing is she has become quite content when they are off and loves to play on the floor or in her new bouncer where she knows she can grab at toys, this makes it hard to get her to keep them on and hard for us to stay there and keep putting them on when she is so happy. She is an absolute JOY and everyone who meets just falls in love, she smiles more everyday and even tries to talk (Avalyn thinks she is singing sometimes). She is growing so fast and doing well!

She has her next appointment with the ophtomoligist on Mon. and there are sure to be more updates. I almost forgot, one more prayer request- we have learned more information about a program with our insurance that helps children with special needs and there is a possibility that there will not be the expense for this coverage we originally thought and they will cover any necessary assistance- such as glasses or special therapy. We are praying that this will work and that they will agree to pay for her future glasses (it's too late for the 1st pair- only wish we would have known more, but this program isn't discussed at all and what is on the internet leads you to think it cost more $ than it is worth, you have to figure it out yourself and find who to talk to). Thank you for all your prayers! WE LOVE YOU ALL!!!

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