Thursday, October 14, 2010
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.