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

From: Sue&Glenn Hardy Date: Wed, 10 Dec 2003 05:10:48 

<<<JT had a tube, pump, and more. I can sense his wall going up because hesees 
the Gtube as a step back for Genevieve and preparing himself for whathe thinks 
is inevitable. So I am struggling to be positive for both ofus....<<<>I can see 
why he thinks it's a step backwards, but then on the other handeating takes up 
so much energy for some of our kids that they stop eatingdue to fatigue and the 
parent thinks they are full,  it becomes a circle,the next time the child is 
still tired as they did not get enough nutritionthe last time ect ect. A g-tube 
allows proper nutrition and does not use upenergy trying to eat.  Rebecca was 
NG fed for her first 15 months, and thengot her g-tube, I regret not doing it 
sooner, for us it was the best thingto do. And it doesn't mean its forever, 
Michelle's Faren had hers removed,and Aussie Alex has one but does not use it 
often. For us it is forever asRebecca has swallowing issues and we don't even 
try anymore to feed herorally as it was a huge battle
 all round.


Hey Sue,

That is where the guilt comes in- I know eating burns the calories too, our 
service 

coordinator told us the pump wouldn't be forever and to 'get her over the 
hump'. 

But it is something sticking in my craw .... honestly I am feeling rushed into 
this, 

I have been given so many ideas to try that I feel they should be explored and 

Gtube be the last resort. I was excited she put on 8oz in 2 weeks after being 
sick 

most of November, but not enough on her 'chart'. Her small incline evened out &

it's from her getting sick. They said the thrush causes a reduction in appetite 
too.


>>>>>>>>They said she wouldn't walk, but about 3 weeks ago, she startedwalking 
>>>>>>>>and hasn't stopped.<<<<<<<>WTG Genevieve!!!!  Walking!!! And not even 
>>>>>>>>very much behind the expectedtime to start walking!

Thanks : ) I have never given up hope that she would walk one day. I have her 
confined to one room so less apt to burn more walking.>>>I mentioned some of 
the weight gainer shakes they have, and most repliesfrom doctors/nutritionist 
was they are geared towards adults, trauma/burnpatients, not tested on 
toddlers, etc....<<<<>What about pedisure??? Its for toddlers, and besides what 
did they thinkthey were going to put down the g-tube anyway???

She is taking a wee bit over 3 cans a day now of Pediasure, but he wants it 
increased to 5 cans a day.Pamela- mom to Savannah 15, Faith 8 days shy of 5 yrs 
old & Genevieve 
16.75 months old (46,XX, dup inv ins 5(q31.3; q35.1q34), missed amnio) 


 


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