I'd also like to hear from Holly about her experience with tube feeding.
Didn't Morgan have a tube, then have it removed once he didn't need it anym=
=3D
ore?
Wow! Someone would like to hear from me, I don't hear that very often. LOL=
=20
Yes, Morgan did have a g-tube, the Bard button, from the time he was 10 day=
s old until he was about 2 1/2 yrs. old. He never drank from a bottle, alt=
hough we tried at every feeding for the first 6 mos. he never took more tha=
n a couple of oz. At 6 mos. he was started on a sippy cup by a feeding th=
erapist and he did pretty good with that. He would, or could, only drink o=
ut of 1 specific cup, it was Ansa brand with the hole in the middle so litt=
le hands can hold it. It had a straw valve rather than those other round v=
alves that most cups have. The big difference was that it only had 1 hole =
in the mouthpiece instead of the usual 3, so not so much would come out. A=
nyway, he started taking cereal at 5 mos. and then baby foods from 6 mos. o=
n. I don't know that we did anything special he just seemed to like to eat=
once he started, although he wasn't always a big eater. And some old time=
rs might remember when I was so frustrated with him when he was about 3 or =
so and he would refuse to eat (the tube was out then) and I didn't know wha=
t to do. Everybody chimed in that even their "typical" toddlers went thru =
these kinds of stages and I should be glad he was acting "typical." Ha! =
So, when he was 2 1/2 yrs. old we hadn't used the tube in about 6 mos. and =
he was due for a change so the dr. said if we wanted to just leave it out w=
e could. We did. He still sees an o.t. for feeding issues as he has a de=
layed chewing motion. He has never aspirated, to my knowledge, and his gas=
troenterologist said he doesn't present like a child that would aspirate. =
His food still has to be mashed but he does eat some crunchy foods like che=
esy crackers, chocolate chip cookies, cheetos.
The thing about the Bard button I didn't like was the way they change it. =
Morgan had his changed several times as he outgrew them. Here, they do it =
in the dr's office and they just yank it out! Morgan would scream and it =
was a bloody mess. I made Mike go one time when they changed it and he ref=
used to go again. I didn't know about the Mickey until we joined this list=
in 2000. =20
I don't know if this helps, but my experience was that if the child is able=
and you just keep plugging away you can keep them an oral eater even with =
a g-tube. When Morgan was sick earlier this month and in the hospital I wa=
s so worried because they had him on i.v. fluids and an ng tube. They were=
doing all kinds of suctioning every 2 hrs. (he is not used to that) and he=
hated it. Well, the suction tubes are alot like a straw and he is a straw=
drinker. The first time I tried to get him to drink from the straw he was=
having nothing to do with it. I finally convinced him to drink, but only =
after I let him hold the cup and be in control. It was the only way he kne=
w it wouldn't be something bad, I guess. His therapists told me to expect =
an aversiong to eating or to certain textures, but it never happened. When=
he came home he was eating normally. =20
"I expect to pass through life but once. If, therefore, there be any kindn=
ess I can show, or any good thing I can do to any fellow being, let me do i=
t now, for I shall not pass this way again."
William Penn
Holly -- wife of Mike, mom of Morgan (8 yrs.), partial t18q & partial mono=
somy 9p (unbalanced translocation)
mommy to Bonnie (border collie/spaniel mix) and Clyde (gray kitty)
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line