[tri-med] Re: constipation

----- 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
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