[tri-med] Re: Losing weight

When our daughter Zoe was born (T18 she is 5 months old) they did nothing
for her.  With all my other children they made me put the stuff in their
eyes, the vitamin K shot, the PKU test or whatever it is called.  So, they
wouldn't even do the routine stuff they do with all other babies.  With  her
they just told us to take her home and enjoy her.  I had to insist on an
Echo and an ultra sound of her kidneys.  She wasn't even eating well when
they sent us home. I overheard one of the nurses making a comment that let
me know she was surprised at how little they were doing.   Anyway, she
continued to lose weight and not do well until we decided we had to fight
for her life.  We were just so clueless as to what to do since the doctors
all told us to do nothing.  To make a long story short, she nearly died
before we got help but once we started insisting on care, we have been given
great care for her.  We did have to change pediatricians but all the special
doctors have been great.  She ended up having to have a Nissen, and a G-tube
but has been doing well ever since.  She went from 4lb 13oz to 10lb 5 oz.
in three months.  Her root problem with not gaining weight was her sever
reflux.  You need to get at the root of the issue.  The doctors want to lump
everything together and just say that trisomy babies don't gain weight or
have a hard time eating etc.  They all felt like we were putting her through
too much at the time but now that they see her doing well, they realize we
did the right thing.  You need to be the one who decides what your little
one needs.  You as a mother will have that gut feeling as to what is too
much for him.

Sarah

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: