[tri-med] Re: Bonnie- a twin family contact for support

OOPS, I just re-read my email....Caroline was NOT expected to make it to
term.
A little early here for me after being up too many times with my little ones
last night!



On 1/28/06, Irene Smith <67.irene@xxxxxxxxx> wrote:
>
> Bonnie,
>
> Welcome to the list.  This list is a Godsend.  I can't say enough about
> it.
>
> My second daughter Caroline (I have 3 daughters) has a rare chromosome
> disorder, a partial trisomy 17p.  There are no other 17s on the list (that I
> have ever heard of) but my daughters issues are VERY similar to those of T13
> and 18.  She was diagnosed via an amnio and was expected to make it to
> term.  She is now 2 1/2.  She is very delayed, she is tube fed, she doesn't
> walk or talk, but she isn't even close to being the "vegetable" the experts
> claimed she would be.  Our first year with Caroline was a little tough, but
> things have calmed down a lot.  It is still hard sometimes, since I also
> have a 7 mo now, but life isn't nearly as "miserable" as everyone made me
> feel it would be.
>
> I live in a small town in Western PA, about an hour south of Erie.  I grew
> up in Erie and still visit my family there about once a week.  What part of
> Western NY are you in?  Since Erie is on the border of NY, I was just
> curious how close you may be.  I would love to be able to help you in any
> way I can.  I am also 38 (almost 39) and know what it feels to be considered
> "of advanced maternal age" (haha, I hate that term).
>
> Please take care and congratulations on your twins!!!!!!!!!!!
>
> Irene
> Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
> 6/23/05)
> Caroline's site:  http://www.caringbridge.org/visit/carolinesmith
>
> On 1/28/06, Bonnie Klein <bsklein@xxxxxxxxxxxx> wrote:
> >
> > Hi Everyone
> >
> > Thanks for all your concerns and prayers.  I can not sleep this
> > morning.  I live in Western New York state.  It is only 6:45 am.  So far the
> > only risks of carry both - which is what I think I want to do- is premature
> > labor.  I am already at risk for that due to the fact my 22 mo old went 6
> > weeks early and now twins.  The specialist that I am seeing due to twins and
> > my age --ha ha 39---- said to me wouldn't you be upset with yourself if you
> > lost twin A because you did not terminate twin B and they were born at 29
> > weeks... So far everything looks fine with twin A.  I did get an apt to see
> > a DR in NY city on Tuesday for an ultrasound and consult.  I guess having
> > the twins makes it a harder decision for me.  I do not want to end up losing
> > both as I tried for children for a long time and it just didn't happend and
> > now I do have one beautiful little girl and hopefully two more..
> >
> > Bonnie
> >
> > -----Original Message-----
> > >From: David & Tracey Pass <pass@xxxxxxxxxxxxx>
> > >Sent: Jan 27, 2006 6:23 PM
> > >To: tri-med@xxxxxxxxxxxxx
> > >Subject: [tri-med] Re: Bonnie- a twin family contact for support
> > >
> > >Bonnie,
> > >You stick to your guns!!  Have they given you the risk ratios for
> > selective
> > >termination?  You may just lose your other precious one too.  They can
> > do
> > >serial USS to make sure that both babies remain 'viable'.  It's up to
> > YOU
> > >don't let them bully you.  I'm sure it must be hard for you (we didn't
> > have
> > >prenatal diagnosis so we didn't have these fights) but if you want to
> > >continue then tell them so and don't let them make the decisions for
> > you.  I
> > >wish I could be there for you what part of the US are you in?  Maybe a
> > list
> > >member could meet up with you somewhere???
> > >
> > >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 (18) currently wandering in the
> > >'wilderness', Louise T18 (in heaven since July 1990), Jono (14), Jesse
> > (12),
> > >Jimmy & Pippa angel dogs, Millie (our faithful girl) and wife to David
> > my
> > >soulmate & best friend for 26 years now!!! :O))
> > >
> > ><///><><///><///><><///><///><><///><///><><///><///><><///>
> > >
> > >OUR GOD REIGNS
> > >
> > >homepages - www.geocities.com/cuddlefishtoo/index.html
> > >
> > >
> > >                  Building ___ooOOoo__ Rainbows
> > >                       www.trisomyonline.org
> > >                  Families Helping Families On-line
> > >
> >
> >
> > ________________________________________
> > PeoplePC Online
> > A better way to Internet
> > http://www.peoplepc.com
> >                  Building ___ooOOoo__ Rainbows
> >                       www.trisomyonline.org
> >                  Families Helping Families On-line
> >
> >
>
>
> --
>



--
Irene
Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
6/23/05)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

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

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