[tri-med] Re: constipation

The Internet has certainly give Claire a longer life... meeting mom's who 
even had living T18 babies, that I could correspond with, who felt like me 
about terminating... without them, I would have just had the drs saying, 
'incompatible with life'.  ... and wonder if things would have been 
different when we found out.

My sis-in-law is a social worker, so I would have certainly found out about 
the EI's etc early on... having her was a blessing for Claire.

Debbie  - mom to Claire, Full T18 and 7 months old
http://debbwebb.com/Claire/

At 11:37 AM 10/24/03 -0400, you wrote:

>----- Original Message -----
>From: <NanlorW@xxxxxxx>
>
>
> > In a message dated 10/23/03 4:45:37 PM, jwaite@xxxxxxxxxxxxx writes:
>  <<  We never had a dr suggest any meds for this. Seems like a lifetime ago.
>
>
> > I think that our boys were born too early and too healthy. No one thought
> > that something as mundane as constipation was any more a problem for them
>as it
> > would have been for a non-trier.
>
>I do have to admit, there are times reading posts from folks with younger
>children and I think "Wow! To have had that kind of support would have been
>amazing".
>
>  I mean, we were sent home with an infant who couldn't suck, I was
>attempting breast feeding and it's taking 1 hr to get 1-2 oz of liquid into
>him. He's floppy, unresponsive to stimuli (pain or otherwise), never cries
>except for a kitten like mewling, sleeps all the time unless I wake him and
>the pediatrician tells us at 6 weeks that "He's doing well". At that point
>I'm totally exhaused and stressed with a child who was NOT doing well.
>
>Offers of feeding options, PT, OT, dietary consults etc..........NEVER had
>them. Maybe they didn't offer these things up 16 yrs ago like they do
>now????????  And being a first time parent and not having any idea there
>were options available I never went searching. Felt really stupid when I
>realized years later that there were options for helping Alex (and us) along
>but for my ignorance and lack of medical support. This even with Alex being
>followed by a team from the local neo-natal hospital---every visit was a
>full spectrum eval by "experts" and all we got were "developemental delays"
>and them telling us what to do at home.
>
>Shesh, Alex is lucky to be alive. More so than I knew at that time.
>
>Do have to say, the invention of the Internet really does make a
>difference---people are WAY more educated in many areas and ignorance
>doesn't factor in like it did back in "the good 'ole days". I really,
>really, really wish I'd had this resourse back when we were first landing on
>the trisomy roller coaster. There simply was no where to turn back then.
>
>Now I sound like a dinosaur!  :0)
>
>Michelle mom to Alex (16,partial trisomy 14 mosaic) and Molly (12)
>MichiganUSA
>
>
>
>
>
>                   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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