[tri-med] Re: Nestle Additions/Weight Gain-Ann

I am having a fed-up with the "establishment" day!  I cannot believe how
some of our doctors treat us!  Karen's doctors trying to get her to give
Alex formula instead of "normal" food.  Aaaargh!  That is the dumbest
thing I've ever heard!  If I took my 5 year old in to her doctor and
said I'm not going to feed her food, just formula, they would probably
call CPS on me!  But they recommend and encourage formula for our
syndrome kids, even if we want to take the time and effort to avoid it.

That alone just reminds me that we need to make sure our doctors look at
our kids as individual children with a disorder, AND your normal average
kid.  It's hard for all of us, but it's possible.  What I mean is, our
kids have their own growth curb.  When Elanor was tiny, they would
always tell me she was small, yadda yadda, but if she had a couple of
fat rolls and was growing in length at all, I was fine.  Our kids cannot
be judged by the standard curve.  But that doesn't mean treating giving
them real food should be banned because they have a g-tube!

I guess what I really want to say is to do what Jude said.  And
remember, you are your kid's parents.  No doctor, nurse, therapist,
technician, etc. (no matter how great they are) knows your child better
than you--the person who most likely spends 24 hours a day with them!
Never underestimate your capability and your ability to do the best for
your child!  You are their #1! :)

(sorry if I started a little negative)

Jennifer, mom to Elanor-3 1/2, full T18; and Arwen-5 1/2; caregiver to
Joe-25 cerebral palsy & spastic dysplasia; wife to Andrew-32 and
wonderful! 
Boise, Idaho USA


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

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