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Just a quick note to say hi!
You deserve a big bear hug!
You're in my thoughts all the time, but especially today.
Thank you for everything!
Welcome to our community!
You are in my thoughts and prayers.
Hope you feel better soon!
Congratulations! Time for a celebration...
Happy Birthday!
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Noelachas
08/12
Just a quick note to say hi! continue.... I hope organizations see our children in a larger perspective, that they have strengths too and could be their legacy; that they are not medical abnormalities or burdens but actually carrying the burden for humankind. And we, their parents, carry them.
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Noelachas
08/12
Just a quick note to say hi!continue....They have weaknesses, or drawbacks, but they also have strengths. I believe my daughter did not cry at birth because she found no reason to cry. But she was able to open her eyes looking at my direction the moment she heard my voice inside the NICU two hours after birth. And there were five of us inside the room. The others were also speaking as they manually ventilated her.
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Noelachas
08/12
Just a quick note to say hi! continue....My hypothesis is what they are undergoing is some sort of transitional change in the human genes. I believe it is not a disease, but a process that is randomly being manifested around the world. They are having a "different genetic orders" and not "genetic disorders". I think your daughter also has high tolerance to pain. I believe this is one of their attributes.
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Noelachas
08/12
Just a quick note to say hi! continue... Her pedia-cardio doctor said she will need a heart surgery by age two. It will cost around $15,000 here. We hope to get some help by that time. Anyway, your daughter looks okay. Parents of children with different genetic orders really have a challenging life  As I told Cead in this forum, I think our children are carrying a burden for mankind.
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Noelachas
08/12
Just a quick note to say hi! Her name is Ishael Jhane Achas. The therapies you mentioned are expensive and only privileged people get them here in the Philippines.You are very fortunate if your daughter are getting her medical needs in Florida. We cannot even give our daughter the regular check-ups she needs. Anyway,  God is merciful that she is alive and going strong.
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Noelachas
08/12
Just a quick note to say hi!Well she was only 2 kgs at birth, 15 inches long, poor cry, had lung complications, hole in heart, TOF, polydactylly in her left hand, anterior fontanel extends to the center of forehead like a large "V", possibility of recognizing father's voice two hours after birth, good reflexes, NBS normal, very active, showed ability to suck few days after birth. But now at five months, she cannot still hold her head up and underweight. Her genetic order is "46 xx add x qter". We are Filipinos.
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Noelachas
08/12
Just a quick note to say hi! Thanks for inviting me. I also have a daughter. She is only five months old with a still unknown genetic order.
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