[tri-med] NEED GT INFO - Sorry

   First of all, I'm so sorry for being so out of
touch.  The past few weeks of school have been a
nightmare.  I came close to not making it.  I
finshished with 4 A's, and one lousy C that almost
caused me to flunk out.  Must have a 79 to pass and I
finished at an 80!
    At conference in July Marissa was up to 29 pounds
and was gaining quickly.  However, as the temp started
to drop, and the germs increased her weight decreased.
 We just got her back up to 26 pounds.  We saw the
ortho yesterday and we got her her own little walker. 
It is so cute.  She is taking 4-5 steps at a time in
it.  It's a start.  He is just going to watch the
scoloisis as he's not concerned, and since she is
taking a few steps doesn't want her in braces.
     Today we saw the dev.ped and she is not happy
with her weight at all.  Also she only eats 25-30 oz
and the dr said she must have 36oz each day no matter
what.  So, she brought up the subject of a g-tube.  I
have fought it all these years b/c she followed the
growth curve.  Below it, but still had a good curve. 
She has lost that though and is sick again today and
has only had 12oz. Each day is a battle and our focus
each day is on feeding.  It can take an hour to get an
8oz bottle down her.  Although, the thought of a
feeding tube terrifies us!  I know that sounds silly,
but surgery, infection, ongoing care, ect is extremely
intimadating.  However, the thought of feeding her for
30min and putting the rest in the tube sounds so nice.
 The thought of focusing daily on other things sounds
nice too. I told the dr I would research it, she asked
how (not that I won't have a bacholors in science and
can't research or anything!) and I told her about all
of you.  We didn't really like her, but who could
after a 3 in room wait!  She said so they have
experience in pt3 pm10 - I said NO, no one can since
she is the first reported case in the WORLD, but they
all of trisomies and tend to experience some of the
same issues, and 50% of them or so have g-tubes.
So, HELP!  Tell me ups and downs.  She said there are
a few choices -tell me what you have.  Marissa is
extremely activity, how will this effect it?  She is
also a picker - won't she pick at the button?
Anyone have any pics?  Send them to me.  Other places
for info - let me know.
I don't know what to do.  I just feel like I've fought
this for so long and now I don't know... I'm not sure
what I'm fighting is right anymore. Kenny says he's
against it, but will do what I want.  But he admits
he's against it, b/c he's afraid of it.

Ok, looking forward to your comments.

April, Wife to Kenny, Mom to Marissa, 3 years old, 
PT3 PM10
http://marissakayroles.homestead.com/Marissahome.html
IN, USA


 


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