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My
mummy and daddy have been worried about how little I ate or drank for
a long time. I stopped drinking from a cup or bottle in 1990 - and I
had to get my drinks from tap slurps, washer sucks and shower water.
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I
was always dry and had blue rings around my eyes a lot. I didn't know
what thirst really meant. I went to the Land Rover Field Day in 1991.
It was very hot and I wouldn't suck my wet washer. I was very sick when
I got home and took 2 days to feel better.
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Also,
I have no real sense of hunger and, if my mummy didn't get my food into
me, I would be very sick. Because I have problems with taste, smell
and texture also, I cannot eat properly. Baby food has kept me alive
for all of my life - Mummy mixed her own casserole with my meals but
one day (in August '92) I stopped eating her good food. I started to
lose weight.
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We
went on a holiday to Tasmania in January 1993. Here I am with Uncle
Richard. I stopped eating my breakfast and evening weetbix on this holiday
and then I became sick.
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I
became tired and listless. I used to run around and then lie on the
floor for a rest. My skin went yellow-ish. The doctor said I was severely
iron-deficient and anaemic. Even my doctor was very worried.
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Every
morning I had a long shower to give me enough water to last me through
my school day. When I got home I would have 2 showers and a bath (with
lots of hair washing)
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My
paediatrician spoke to many doctors and they decided (with mummy and
daddy) that I should have a special operation to make me better. It
was called a gastrostomy. I would have a tube put in my tummy. Then
mummy or daddy could give me feeds to keep me alive.....and well.
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I
went into the Royal Children's Hospital. My ward was 8 East. They gave
me a special room (for just me) and there was lots of pink sleek tape!!
They thought they had taped everything but I still kicked the nightlight
glass in!!
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I
flushed away two nametapes and a cup so look what they did to the toilet!
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I
loved my bed.
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After
I went to sleep in mummy's arms, my doctor put in my special Ross Abbott
14 Fr tube. I was very sore for two days and had a special bodysuit
made to stop me pulling at my tube. The nurses gave me Osmolite feeds
and I felt (and looked!) better.
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I
needed to sit in the big chair to rest.
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I
loved listening to my special tape recorder, especially "Deep Forest".
The nurses and mummy played it all day and night.
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When
I was in hospital, one of the nurses took me (in my pusher) to have
my photo taken. Aren't I cute?
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Within
4 weeks of my operation, and after a lot of feeds, I put on weight and
was a lot happier.
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I
don't really notice my tube now. Mummy tucks it into a little bag.
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I
even help mummy put the tube into the bag.
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I
can dress myself.
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I
am wearing my special white bodysuit.
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Boy,
I'm tired!!
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