[tri-med] Re: Debbie- Re: feeding tube question from a former list member

----- Original Message ----- 
From: "Janet Leigh King"
> Moms (like me) often have concerns that once the tube goes in, it may
> never come out, and when a baby feeds orally already, it is like a
> step backwards to put one in.

You guys must have been in Alex's bedroom last night!!!
Alex was at karate when the balloon popped in his Mic-Key. Its been over 12 
months since his button was changed.

I have been waiting for years for Alex to be ready to not have his button. 
Alex had his placed when he was one and whilst he was totally dependent for 
4 years he hasnt been for the last 6 years and in fact other than when he 
has occasional meds or he is really sick and I want to keep him at home 
instead of on an IV in hospital we havent used it at all in 4 or 5 years. 
But the g-tube is a part of Alex's identity. He didnt want to have it 
out.......... after the disaster and grieving with his ear surgery I wasn't 
going to push.

Last night he did and for the first time in 5 years I wanted him to keep 
it!!! It was an hour and a half before I talked him into my way of thinking 
and by then it was almost too late, I had a really tough time getting the 
new one in. But we did finally. The deal is that next time we leave it out.

BTW Alex's reason for finally wanting to leave it out was that it gets in 
the way with the carabeener (sp?) when he goes abseiling.

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

Other related posts: