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We are a group of friends who have come together because we share the common bond of caring for someone who has Trisomy 21. We are here to share therapy tips, medical issues, laughs, accomplishments and yes, even frustrations. We embrace what Trisomy 21 has brought into our lives. We feel that it has taught us to appreciate the true meaning of life. We count our children as blessings! We will fiercely protect them and fight for their lives to be valued just as all other peoples' are. We share our pictures, our stories and our hearts here not only to provide friendship and support for each other, but also in the hopes that others will open their minds and their hearts to our unique children and, in turn, make a better world for everyone.

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Our boy seems to be going backwards - Anyone else have similar experience/advice?

September 14 2008 at 3:52 PM
Kat-n-Matt  (Login DJGolferT)


Our first time posting here, but we were pointed here over a year ago by Julie and Mina and we've been reading and nodding our heads to the posts we've read.

Any help or advice on THIS subject would be appreciated!

Introducing Sebastian (T21, 17 months).

He was eating solids (stage 2 foods) and Enfamil but throwing up daily.
His GI doctor prescribed 2 medications for acid reflux but those didn't help for longer than two weeks. The GI took him off solids and put Sebastian on Elecare and the meds. That lasted great for two weeks. So off to the hospital for 'failure to thrive' and an NG tube (among other things) for a few days to get hydrated. The hospital found nothing wrong with him other than the 'mild reflux'. Since then he doesn't even try solid food and he refuses his bottle now more than ever... but two weeks ago he was eating 26 ounces of Elecare a day. Now, we're lucky if he eats 13 ounces. He goes on these 1-2 week honeymoons of eating like a champ after doctors prescribe something new and then he drops down to next-to-nothing, but we're running out of money, ideas, and most importantly, patience.

Anyone else have this impossible luck with thier kids?
Any suggestions?

2008-08 August 064

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