New Here (My Son has a rare Genetic Dis)

iVillage Member
Registered: 07-18-2006
New Here (My Son has a rare Genetic Dis)
5
Tue, 07-18-2006 - 1:43pm

Hello Everyone....... I'm new here :) I am 30 years old (just turned, ugh!)... I recently got out of a 10 year marriage, my divorce was finalized in May. Dennis and I are engaged... We are a blended family, I have two boys, Calahan who is 10 years old, and Noah who is 4. Calahan has ADHD. Noah was born with an extreamly rare genetic disorder. We were told when I was 4 month pregnant with Noah that he wouldn't survive - period. He was born at 33 weeks, at 1lb 12.2oz and was 13 3/4 inches long. He was in the NICU for nearly 7 weeks, coming home the day after his due date. (his genetic disorder is called Mosaic Trisomy 16, you can check it out at www.trisomy16.org and under the "OUR STORIES" section, under the MT16, you can click on NOAH and read some of his story.) ... Dennis has an (almost) 2 year old daughter, named Jessa. We are hoping to have one or two of our own... Ummmmm... I write (poetry, short stories, novels --the last one I finished is 500 pgs long), I'm an amateur Photographer... I'm a huge TV & Movie buff... I've just lost over 50lbs.... I love the rain and the stars & moon... That's a little about me I guess :)

~~ Annissa Rae ~~

iVillage Member
Registered: 07-18-2006
Wed, 07-26-2006 - 12:50pm

Awwwwwwww Luanne, she is BEAUTIFUL!! Noah had some craniostenoses, but over all he is well and we can't complain (nor will we)...

Do you have yahoo messanger? my yahoo email is miraclemommybear@yahoo.com and the yahoo ID for messenger is the same :)

*ANNISSA*

iVillage Member
Registered: 08-27-2005
Tue, 07-25-2006 - 12:20am
Welcome!

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iVillage Member
Registered: 08-20-2004
Wed, 07-19-2006 - 11:50pm
Hi Annissa! Welcome to the board! I am 28, also divorced for almost a year, and recently remarried almost a month ago to my daughter's father. Faith is 15 months old and has an encephalocele, her skull didn't close and part of her brain developped outside of the skull. They diagnosed her when I was 11 weeks pregnant and said that she too would never live more than maybe an hour! You can read about her story at http://luslilangel.tripod.com and see pictures. I hope you find the support and encouragement needed from this board. You can e-mail me if you'd like at miraclefaith_2005@yahoo.com Welcome to the board and I'm going to check out your sons story right now!!!
Luanne

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iVillage Member
Registered: 07-18-2006
Tue, 07-18-2006 - 3:01pm

Thanks for the welcome Dawn :) I never have a problem talking about Noah .. lol.. he's such a huge miracle to me. Calahan is too, he survived the miscarriage of his twin, somehow hung on :) We found out he had ADHD when he was 3, and he started meds when he was 4. I was dead set against putting him on meds, but he was out of hand. So I decided to try them and they have helped him so much. He's very smart, but he has a lot of issues going on, and some of them (i recently found out) go back to issues with his Father. He's a very smart kid, but he doesn't feel like it, and his Mommy trying to tell him just isn't doing it for him. My kids are currently out in WA State with my mom for the summer, I leave on Aug 1st and bring them back on Aug 15th :) I can't wait to have them home!! I've missed them sooooo much!! My mom's bright idea! LOL... This is the first time I've been away from my kids for any huge amount of time and I'm going nuts wanting them home!!

*Annissa*

iVillage Member
Registered: 10-23-2003
Tue, 07-18-2006 - 2:40pm
Hi there
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