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

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
>
>


--

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

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