Wednesday, September 09, 2009

Cognitive deterioration associated with Down syndrome.


Brogan is sweet and happy and showing a lot of promise for a baby that got some REAL bad news and has had a very tough time since birth. I'm proud of our guy! He is strong and he is
making milestones! He charms his parents every day.

Here is the down side of Down Syndrome. What I was worrying about, I finally got more info about. Well let's fight this too, but how oh how? Guess when you put deterioration into your search query it makes a difference, hu. Why can't they say this stuff up front instead of trying to placate the worried parents?

They tell you that your child will learn and will be able to do stuff like any other child, but may just be slower about it. REALLY? Did I buy into that? Yes I did. I think the hospital didn't want to break my heart more or take the fight/love out of me for this boy. But I'm not a delicate flower and the facts are what I need. They don't have time to get all the facts though so that is just what they tell mothers who have found out about their DS baby.

I have a fierce love for my son. Doctors want you to have amniocentisis to be sure your child doesn't have defects. Morally wrong, the doctors are giving women a choice to abort their baby based on test results. I could never have aborted my son, I was too bonded to him at 12 weeks when they offer the tests, so I declined. For me, it wouldn't have made any difference.

I don't think I've ever looked at Brogan with limited expectations. His dad doesn't and his sister wouldn't dream of it. He really is exceptional and surprises his doctors everytime they see him.

Gimme more Lasagne!!!! (please)

Can't we have a little hope that our guy who is so bright and muscular and charming and sweet will be able to retain his brain function as he goes along in life? It's my worry that he will lose the gifts that he has now. I'm ready to intervene with nutrition. I only hope that it is enough.

Check out those muscles!

Still no ear infections. Muscle tone of a little wrestler... this guy is strong. He does have nystagmus and we are going to learn more about that. I see it more when he is tired.

I do swear by the targeted nutirional intervention program on this website though. He's been doing so great, and we've had him on this since early infancy.

I guess the real message is - I KNOW what doctors are going to tell you. I know you're going to be heartbroken and you are going to need to see your little baby as just fine. I cried for what I thought my son was going to lose until I figured out that my son won't lose a thing because he has parents that will make sure he has the best. This boy will be more special to us, and I am hoping that he never wants to move out. Geez, how selfish is that mom? Wanting to keep your babies forever with you?

Whatever they tell you, just give your best to your baby - give him the best and then watch the doctors exclaim in amazement because your intervention has made a real difference. Never give up on your child. Don't let a worrisome thing like a diagnosis change your attitude or love as a parent. I have so much love for our son, and I am very proud of him. I do have a worried underlying sadness when I look at my bright, beautiful sweet son and think of his brain deteriorating.
I'm ready to fight against this worry. Let's go.

Grrrrr...

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