"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Thursday, October 14, 2010

Noah SITS!!!



That's right! Thats my boy! He is working so hard and look at him. I can't believe it! Everyday he amazes me! I really needed this too. I had been looking online about Noah's trisomy 8q2. I found nothing. Somedays I just want to find others out there like us. I would never want a child to have a disability but really there is no one out there with Trisomy 8q2? There are websites on kids with Trisomy 21 (down syndrome), Trisomy 18(Edwards syndrome), Trisomy 13 (Patau syndrome). I am very glad what Noah has is not full Trisomy 8 which ends in death before birth, he is what they consider Mosaicism.I just wish someone could understand, someone could show me their child and I could say yes, exactly I get that, I understand. People know ADHD, Autism, Asberger and other issues but why oh why can I not find one person with Trisomy 8q2? Anyways, I hope you enjoy the video of our little miracle and just ignore my ranting. I am very happy to have a healthy child I am but sometimes I just want someone to have a child like Noah who is older so I can maybe just maybe get a glimpse into what could be our future.

Oh and if you could please pray that Noah starts to take something, anything by mouth. He refuses now completely and is now tube fed only. This will delay us being allowed to get the tube removed plus it is not good not to take anything by mouth.

Be blessed

5 comments:

  1. Noah amazes me every day! He truly is a miracle from God!

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  2. My son Jojo has 8q2 trisomy too my number is 601 588 0405 I would love to hear from you and talk about the boys

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  3. Jojo is 12 years old we r from miss. Would love to compare things that the boys did at what ages what sugerys jojo had and thins he can and acnt do

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  4. Good morin was just wondering if you seen our replys about jojoyou can also read a story on him by just googleing 8q2trisomy and the first story is about jojo its from 2010I'm really waitin to hear from you thanks and god bless you and your family

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  5. My 13 year old daughter has 8q2 trisomy. When I was pregnant I found out that she would had double outlet right ventricle and would need open heart surgery at some point. When Kaleigh was born, the doctors were concerned that she may have mid-line defect so they sent her blood for genetic painting, and discovered that she had 8q2 trisomy. I was given very frightening, vague information from 1977 and let's just say the first few years of her life had us so worried. Kaleigh had open-heart surgery when she was three months old. She is an unbelievably awesome child, my middle of five. Kaleigh is currently in the 7th grade. Feel free to e-mail me at kellygirl1119@aol.com

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