[tri-med] Re: Hello and Thank You (long) for Karen

If you need his contact information let me know and I
> will send it off list and also the contact info for 
Bonnie Baty.

Also - I would personally make sure that your doctors 
have seen a copy of
> the journal articles that deal with the Natural 
History of T-18 and T-13.
> Many aren't, and as such are "behind the times". If 
you arent already
> familiar with these again just let me know, if need be 
I can mail or fax
> them to you.


Karen

Yes, please send these to me.  Thank you.

Deanna
wife to Mike, mom to Nicole 13, 
Jake 9, and Jessica due 5/21/02 
(full t18)
> 
> ----- Original Message -----
> From: <warpehoski@xxxxxxx>
> > Did you receive a prenatal diagnosis?  Where do you
> > live?  The Dr.s here are really pushing for comfort care
> > only.  They won't even talk about surgery.  It's nice to
> > hear a few success stories.
> 
> Deanna,
> The decision for comfort care or not is hard. My personal feelings are that
> it is should be based on each childs individual medical problems and not on
> genetic information. (My catch cry is that trisomy is genetic information
> not a medical diagnosis)
> 
> If you are having trouble with advocacy have you contacted Dr Carey? He is
> wonderful in advocating for our children when needed, will write letters and
> speak to doctors etc. If you need his contact information let me know and I
> will send it off list and also the contact info for Bonnie Baty.
> 
> At the moment he is missing in action, meaning I havent heard from him in a
> couple of weeks. But I think thats just because he is in Utah and of course
> the Olympics are on up there. He can be a bit slack at times in answering
> e-mails but you just keep hassling him (his request!!!!). Bonnie on the hand
> is very good at responding straight away (she is a genetic counsellor who
> works with John). Both Bonnie and John have been working with trisomy for
> over 30 years now, and what he doesn't know just isn't known.
> 
> Another option that parents on the list have found helpful is contacting
> their local right to life group - they often have the names of
> neonatologists and obstetricians that will be proactive.
> 
> Also - I would personally make sure that your doctors have seen a copy of
> the journal articles that deal with the Natural History of T-18 and T-13.
> Many aren't, and as such are "behind the times". If you arent already
> familiar with these again just let me know, if need be I can mail or fax
> them to you.
> 
> He who never made a mistake never made a discovery.
> -- Samuel Smiles
> 
> Keep Looking for Rainbows!!!
> Karen, Mum to Alex (7, T-18 mosaic)
> Sydney, Australia
> http://members.optushome.com.au/karens
> http://www.trisomyonline.org
> 
>                   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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