[tri-wings] Re: Introduction

Hi my name is Tracey,
My reason for being here is our daughter Louise Ruth Pass she had Full 
Trisomy 18 and lived a very happy 5 months with us at home.  Karen and I met 
and started SOFT Australia in 1996 after I met Mary Beth Jeanes from Texas 
(she had a daughter with Trisomy 18 and was out here with her husband at 
RAAF Base Williamtown) Mary Beth gave me some copies of SOFT Times to read 
and I couldn't believe my eyes those were a few tearful days.  So I wrote a 
letter to SOFT Times to tell them about our beautiful girl and Karen had 
been receiving it here in Australia and didn't know there was someone else, 
after some calls to Telstra and a very tearful phone call to me we decided 
to meet and start the support group here in Australia.
Louise came as a complete surprise to us she was our second pregnancy and I 
was 26 at the time.  We were living in a remote community and living on a 
fairly small amount of money so while I had pregnancy care I didn't have 
ultrasounds or anything like that as my first pregnancy had gone so smoothly 
(described as textbook by the dr) that we felt USS was superfluous this time 
around.  Louise was diagnosed 7 days after birth and although I had heard of 
chromosome anomalies before I had NEVER heard of T18!!  Neither had most of 
the drs and we were given little hope and sent home with no support 
whatsoever.  Louise had a VSD, ASD, valve defects and blockages all up more 
than half a dozen cardiac defects.  Her fists were clenched and she had a 
very poor swallow/gag.  Louise had a couple of chest infections, suffered 
with the slow bowels that all our kids do and fed orally although very badly 
(I tried my best with no clue at all on bottle feeding as I had breastfed 
Jen), she was blue most of her life and only had 'pink' episodes when she 
was bathed and when she visited the ER the day before she died and was 
placed on o2 (still wish I had had my camera that day she was beautiful). 
She was a joy to us all and we still miss her heaps.  I have been on the 
list since it's inception in 1997 and OMG can't believe we've been around 
that long.
If given the chance of life all over again I wouldn't change anything 
because through Louise I have met some of the world's most beautiful people, 
I have travelled to the USA and I have become a total computer nut!!!  all 
good!!!

Don't worry about the world coming to an end tomorrow it's already tomorrow 
in Australia
Charles Schultz

"Life is like a box of chocolates you never know what you're gonna get!"
Forrest Gump's mother.

Tracey, <///>< RM/RN Mum to Jenny (17) casual donut shop worker, Louise T18 
(in heaven since July 1990), Jono (13), Jesse (10), Jimmy & Pippa angel 
dogs, Millie (not doggy in waiting) and wife to David my soulmate & best 
friend for 25 years now!!! :O))

<///><><///><///><><///><///><><///><///><><///><///><><///>

OUR GOD REIGNS

homepages - www.geocities.com/cuddlefishtoo/index.html
alternate email - cuddlefi5h@xxxxxxxxxxxxxx


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

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