[tri-med] Re: Need to get info (michelle, jude)

----- Original Message -----
From: "April Young"
>> but I wonder who in the
> world has time to feed a bottle for an hour every 3
> hours, live a life, and feed a child that doesn't want
> to be feed 6x a day!

April,
This was the main reason that Alex got his g-tube, at least from my
perspective. Sure he was growing OK, but I was also spending just about all
of his waking hours obsessing with food and I just thought that there was
more to life than sitting in a high chair for 6 hours a day being fed and
another 4 attached to my boob. Not to mention the fact that I was
psychologically exhausted carrying on like a turkey to get each and every
mouthful in. (You know the table top dance to get him to open his mouth, the
TV reward if he chewed it, $10 if he swallowed it etc etc)

I agonised over the decision, especially because as an OT I felt that I
should have the answers and at least be able to feed my own child. There
were medical considerations, sure, but ultimately the decision was up to me.

Alex's pediatrician organised for me to speak to half a dozen other parents
who had had to make g-tube decisions. Similar to what you are doing now.
Some had decided not to go with the g-tube, and others had. And it was great
to get both sides of the story. Those that had opted not to go with the
g-tube all had fantastic family and extended family support that could share
the load. I didn't have that luxury so went with the g-tube. It was
unreservedly the single best thing I ever did for Alex.

Developmentally and socially he blossomed. He no longer spent most of his
day in a high chair, he spent it rolling around the floor, having fun, going
out (the g-tube was portable - his eating habits werent really - not unless
I didn't want him to eat) and so on. He had way more energy because he was
finally get enough food into him without spending all his energy getting it,
as well as time. For me it was as if a huge weight had been lifted off my
shoulders.

Developmentally there are some cons. For example not eating can delay speech
etc. Mo may also be less eager to eat orally afterwards, but on the plus
side she has been eating orally long enough that the motor patterns should
be well established.

If eating and hunger are issues April, has anyone ever suggested an appetite
stimulant? It helped Alex when we put him on an appetite stimulant because
he really has no hunger. There are a few meds that can be used as appetite
stimulants but we use Pericatin (an anti-histamine).

Also sweet if you are finding responses slow and not very complete at the
moment it could be because its the holidays and also because we discussed
the pro's and con's of tube feeding a week or so ago. I know you only get
time to scan your mail from the list so you might want to check the archives
if you missed it.

"It is from numberless diverse acts of courage and belief that human history
is shaped. Each time a man stands up for an ideal, or acts to improve the
lot of others, or strikes out against injustice, he sends forth a tiny
ripple of hope, and crossing each other from a million different centers of
energy and daring those ripples build a current which can weep down the
mightiest walls of oppression and injustice."
- Robert F. Kennedy -

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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