[tri-med] Re: Our baby boy,,

Hi elcome to the family :O)
I'm Penny...wife to Joe, mom to Nick (15 yrs) and Devon (11 yrs). Devon is 
our "trier" with a little something extra :o) As you can see he's 11 yrs old 
now :o) Survival depends upon so many things! Do you have a line on what 
kinds of medical issues your son may have or are they just passing death 
sentence based on the DX?? When Devon was born we were told T13 was not 
compatible with life, he would not thrive (gain weight or progress), and IF 
he lived the next few days and weeks...he would most likely die before his 
first birthday :o( We did not know prenatally and the only test we'd had was 
the genetic testing when he was born which was done because he had a cleft 
palate (because it's a midline defect and can point to other things). So the 
prognosis was passed on without any knowlege about Devon as an individual. 
When he had his MRI and Echo done at 3 weeks and the results came back 
normal they were very surprised. We were also told he would most likely 
never roll, sit, crawl, walk, play with toys, walk or communicate. He does 
ALL those things :O) Not only that...he's very opinionated, has a wicked 
sense of humor and does everything he does with attitude :o) Check out the 
bezillion pictures of him by visiting the links in my signature tag :o)
As an aside...my family has always been very supportive, so have Joe's 2 
sisters...but his mom has never had much to do with him....she's only seen 
Devon two times for about an hour and a half each time :o( Of course that 
could change since her husband just died a few weeks ago...hope springs 
eternal.  She lives in Ohio but they have a place down here off the west 
coast of FL. We only found out about the house down here by accident when 
his sister slipped. Apparently his mom and her husband, Ken, were down here 
about 2 hours away (and had been for about 2 months) and hadn't even 
bothered to let us know they were here. OOPS! She's had a little more to do 
with Nick...even took him to Disney once when he was about 6 yrs old...but 
all Nick really remembers is that they took him to Disney and gave him a 
pink plastic car once for Christmas. Joe's brother is not in communication 
with us...he's most likely either on sabatical from prison or in prison or 
another half way house??? We stopped even trying with him when all of his 
letters (all 3 or 4 of them) were pretty much interchangeable...they all 
spouted news of his new found religion and oh yeah...would we send him money 
for deodorant, stamps, socks and cigarettes :o) The last time we even spoke 
to him was when he called right after Devon was born asking if he could give 
our address as his permanent address and move in with us when he got out of 
the halfway house. What was our response??? Howabout "NOT NO BUT HE// 
NO!!!!!!!".
Don't give up on your family...but don't beat yourself up about it 
either...as everyone tells us...it's their loss. But it still hurts even 
though I probably sound pretty offhand about it. My husband moreso than me. 
I'm more angry at how they've hurt my husband...my kids don't even know 
them...although I wish his mom would somehow have an epiphany that would 
lead her to suddenly become a part of our lives :o) We've always kept 
communication open...and as I said...hope springs eternal....

Do you have a name picked out for your son yet??? I look foward to hearing 
more about him...
take care....

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy 
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11 
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elmo, & food 
in general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper 
the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 
12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our 
trisomy listserv at:
http://www.trisomyonline.org/victor.html
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"Normal people worry me" 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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