[tri-med] Re: Trisomy baby continous fed

Hi Kelly,
Welcome.
Claire has been orally fed since birth, she's full T18. It was a big
stuggle to get her to eat orally, but patience and persistence won her
over.
I'll send you her website and you can see the struggles we've faced.
It was originally suppose to be a small website, as she wasn't
expected to live long - a couple hours if we were lucky -- looking
back, there was no major problems with her except not knowing what
that little brain would do - they still said she wouldn't make it to
term, and now 3+ years later, I'm still updating it whenever possible.
 Her photos are in the journal.
There is another mom on this list who has move her son off feeding
tube to feeding orally.  Was it Holly?
Best wishes, we will keep your little one in our prayers.

Debbie, mom to Claire (t18)
Experience is something you don't get until just after you need it.



On 8/27/06, Kelly Rosberg <rosberg2@xxxxxxxxx> wrote:
> Hi, I am new, I have been lurking around, I was wondering if all trisomy
> babies are tube fed? My son is 4 months and has trisomy 18 (full). He
> has had heart surgery for 7 mm hole in the heart. he is doing well be
> the hospital will not help him much. He is in for phemona now. But is
> growing! How do you get them to change him over?
> Thanks for all the great information
> Kelly Rosberg
> Wausa Nebraska
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


-- 
Sleep is for Pansies.

Faith sees the invisible, believes the incredible and receives the impossible!
If you want the rainbow, you gotta put up with the rain.
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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