Sunday, April 3, 2011

update

Last Thursday we took Yuri to the Opthamologist and he confirmed what the Geneticist said about Septo-Optic Dysplasia. So Yuri now has a diagnosis of Septo-optic Dysplasia and he is legally blind. This is all good news because he has a diagnosis which helps get him services and we can get help from the blind community.

We have appointments with a dentist, an ENT, and an endocrinologist to see if we can figure out what else is going with our little guy.

I took him off dairy completely and he has still been throwing up here and there. I have now taken him off of wheat also so we shall see how this goes. He seems happier off of both.

Super awesometastic news is that he has gained 4 pounds!!! FOUR! How cool is that!
Any way here is some pics for ya.

This lil boy was born a Texan. He loves being outside and playing in water!

Swimming in our huge pool outback.

I think we are going to have to upgrade.

'I'm sitting up and I have a cord! YES!"

Mr. Handsome making noise, er I mean music.

The twins having a blast.

15 comments:

  1. So funny that you call them twins. I have twins too-- one bio, one adopted. They're only 4 days apart. But they look nothing alike. One's white, one's black. LOL! But they act and think just like twins. I love it!

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  2. Look how healthy everyone is looking...I am especially amazed at Yuri. He is looking sooo good, his color is amazing. You are doing great!!!:)

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  3. Oh these pictures are ADORABLE!!!! How happy they look!!! Outside and playing with water---NOT laying in a crib all day. Praise God.

    Good news about Yuri--like you said now he can get services. Hope you get even more answers from the other docs!

    Thanks for taking the time to update. I can't imagine you have many spare minutes!

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  4. So happy you are figuring out what's going on with Yuri. I'm sure that it will make life easier for all once you can get to the bottom of some of the things that he's having trouble with. Hang in there Momma, you're doing just fine!! They all look SO happy and healthy!! Boden cracks me up!!

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  5. I love the picture of Bohdan with the cord. Claire is in love with them too!

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  6. Yuri does look better! We thought my youngest had celiac and we went gluten free with him for about 6 months. It turned out he does not have celiac, but I think that 6 months off of gluten helped his gut mature and now he does just fine. He was vomiting 3-4 times a day, now he only has trouble with things that gag him easy - this week it is grape skins. ;) Next week, he'll throw me for another loop, I am sure. Hopefully, wheat and dairy free with help Yuri - I know it helps so many children with behavior difficulties.

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  7. Such sweeties! Love your updates.They look better and happier each time! Keeping you and your family in my prayers especially Yuri.Warm Blessings!~Amy

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  8. The twins are sooo cute!! And Yuri and Asher are handsome little men too! I keep praying for your family, I hope you figure out what's happening with Yuri so he can feel better.

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  9. Love the pictures!!! You are an awesome mom!

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  10. There is a book called Sophie Safe Cooking and it has been a lifesaver in our house, my youngest has all kinds of allergies and every meal in the book is milk, egg, wheat, soy, nut, and fishless. and most of the meals are mainstream everyday easy cooking type meals but with substitutes.

    Bohdan makes my day, his smile is so contagious!

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  11. Good news that you know more about Yuri! Will glasses be able to help his vision at all, or is his vision too poor for that? He certainly seems in pictures to be "looking"!

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  12. I love your blog all your kids are so cute it makes me smile. I am a braillist for a blind child. And I just wanted to let you know about Hadley (in Illinois)which is an online program that has braille classes for grownups for free. I am sighted and I read braille with my eyes and hadley is how I learned. If you need any more info email me ajholmes21@aol.com

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  13. Be sure to contact your state's school for the blind, department for the blind, and early intervention. I don't know what state you live in, but watch your back if you live in the Carolinas. No disrespect meant, it's just I know several families with low vision children that cannot get a lick of services unless they take the school districts to court...even though their children have a right to services.

    I have 2 children with low vision due to albinism (albino) adopted from China. We have been blessed to live in a state and school district that values our children and does everything it can to help our children become productive individuals instead of being unemployed and illiterate. If you have any questions I can help you with, please drop me a line at lalalorlor@gmail.com

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  14. What a wonderful pile of toddlers!

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