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Our baby girl is finally home :D Amanda.W.P 2 kids; Fort Pierce, Florida 1115 posts
1st Sep '13

Emily is doing great. She is 6 pounds 4 ounces and 20 inches now (she was born 6 pounds 3 ounces and 19 inches) We went to her pediatric orthopedic surgeon and she has a rare congenital birth defect called arthrogryposis. Arthrogryposis is a neuro-musculo-skeletal disorder that affects various joints in the body. The condition is congenital and non progressive. The medical terminology for the disorder is Arthrogryposis Multiplex Congenita. The joints in the body show contractures, stiffness, poor mobility or immobility and muscle fatigue. Basically her joints in her knees, hips, and left foot are way too stiff, and her muscles are too weak. We are going to have to go back and get her legs casted and when she gets older she might have to wear braces on both legs. But it's completely fixable. And she has a very minor case of it so we could have been a lot worse off. Anyways she is home and we are happy about that we just have a very long road ahead of us. We will have to go to west palm beach every week to every other week (it's an hour and a half drive there and another hour and a half back) I'm not sure how long we will have to do this but it's gonna be a while. Later this week we are going to a geneticist to make sure she doesn't have down syndrome or anything and then we have to go to a cardiologist. So we are very stressed out but happy we finally have her home from NICU. Please keep us in your thoughts and prayers.

*KatteyBug* 2 kids; My City, AL, United States 2570 posts
1st Sep '13

I hope things go well at her doctor appointments and I'm glad she's home :)

Amanda.W.P 2 kids; Fort Pierce, Florida 1115 posts
1st Sep '13

<blockquote><b>Quoting *KatteyBug*:</b>" I hope things go well at her doctor appointments and I'm glad she's home :)"</blockquote>



Thank you I appreciate it :)

lolajessup 3 kids; 1 angel baby; Beaverton, Michigan 44076 posts
1st Sep '13

That's great! I'm so glad she's home now! The nicu is no fun :( when was she born?

Jeeper 1 child; Orlando, Florida 2287 posts
1st Sep '13

So glad she is home. Sorry you have to do so much driving but at least you got answers and now know that its all fixable and what needs to be done. Hope she gets better soon and those long drives get cut back.

Amanda.W.P 2 kids; Fort Pierce, Florida 1115 posts
1st Sep '13

<blockquote><b>Quoting Joey Gladstone:</b>" That's great! I'm so glad she's home now! The nicu is no fun :( when was she born?"</blockquote>



August 15th

Amanda.W.P 2 kids; Fort Pierce, Florida 1115 posts
1st Sep '13

<blockquote><b>Quoting Jeeper:</b>" So glad she is home. Sorry you have to do so much driving but at least you got answers and now know that ... [snip!] ... and now know that its all fixable and what needs to be done. Hope she gets better soon and those long drives get cut back."</blockquote>




Thank you :) you're a great friend