Sunday, October 17, 2010

Very quickly

Noah came home today. He is stable.
I will explain more about the disease later. It sucks that he has it and its a lot of pressure to know that our little guy will need medication for life BUT as long as he is on it, he will be able to lead a normal life. I know you don't know what C.A.H. (Congenital Adrenal Hyperplasia) is and the consequences because its really rare but its not a good one to have. Details will follow later.

One thing I will say is that this has nothing to do with any previous "worries" the doctors had before. It is pure genetics. It is a rare gene that can affect the kids of two parents who are carriers. The pediatric endocrinologist was surprised that both Jeff and I have it considering our VERY different backgrounds, but unfortunately we have it and even more unfortunately its going to affect Noah his whole life. Hard not to feel guilty. =(

13 comments:

  1. Try very hard not feel guilty my friend... Things are going to be okay!!! S was explaining a little about the disease and I am so sorry that you all have to deal with this with your little man. Thankfully he was blessed with AMAZING parents like you two - and he will be a-okay!!!

    I hope you are getting as much rest as possible Miss Shanny and I can't wait to hear more about the little bubs!!!
    xo

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  2. Oh Shanny, Ams said it perfectly. I can't imagine what you're going through right now, but try not to feel guilty. You and Jeff are wonderful parents and your babies will be so happy. You two will continue to take care of Noah and he'll be a wonderful little boy. Like I said before, I'm so glad that you found out about it so quickly and that you' were able to get him the care he needs.
    I'm so glad that you're all home and stable. I hope you're resting as much as possible and that you're able to take time to enjoy your two little miracles. ((hugs))

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  3. *hugs* I am sure it's hard not feeling guilty, but I know you guys are already great parents. Happy to know you all are home and that they quickly were able to find out what will make Noah feel better.

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  4. you've done nothing wrong so just be content with what you do know. what a blessing that he is home and you are on a path to make him a strong healthy little boy.

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  5. Just wanted to send you (((hugs))) Noah is in my prayers!

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  6. I'm so happy for you that Noah is finally home again, and stable. I know it must be hard not to feel guilty but I hope you don't beat yourself up. You couldn't have done anything to prevent it and all you can do now is love Noah to pieces every day!!!

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  7. big hugs. you have done nothing wrong. don't feel bad. he will be fine, especially with you as his mommy.

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  8. Big Hugs!! You have given these wonderful beautiful babies a chance to a great life so never feel that you have done something wrong. He will be fine and that is the wonderful thing about modern medicine they will be there to help him every step of the way!!

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  9. I can't tell you not to feel what you are feeling, but you and everyone else knows you would never do anything to harm your baby. I'm so sorry he has to deal with this disease for the rest of his life, but I'm happy to hear its treatable.

    ((HUGS))

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  10. So glad he's home and its treatable. No guilt - just love him up! Sending hugs, positive thoughts and prayers!

    Winks & Smiles,
    Wifey

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  11. I'm not sure if I've ever commented on your blog before but I've read it for a while.

    My daughter has a potentially life threatening congenital heart condition as well. Thankfully, like your Noah, she is doing well. It was caused by antibodies in my blood. I know the guilt you speak of very well. Honestly, the medical stuff just becomes your normal and eventually it doesn't consume your every waking thought.

    A doctor told me once that feeling sadness and responsibility is normal but he'd only allow it for two days and then I could only think about how much I love my baby. Best advice ever but also not easy with PP hormones.

    Sorry for the novel, your family will be in my daily prayers.

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  12. HI Momma...Just wanted to say hi:) Im sure you are super busy taking care of your little bundles of joy!!!!

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  13. Hey girlie...I see that you have a new post but I cant open it....Did you change blogs or is it just my computer? Last one that it lets me view is this post

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