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What is the most useful
piece of equipment?
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It's been different at
different times.
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The first piece of
useful equipment
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was her pushchair.
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She was too big for a normal
child size buggy.
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It allowed her to be really comfortable.
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It's given us the freedom to
do things.
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Actually for us, her
mobility car.
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It has enabled us to go on so
many adventures
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and done so many things
which without the car
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we would never have been
able to have done.
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I think from a practical point of
view though
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in terms of equipment, it's
the suction machine.
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In terms of keeping her secretions
and airways open.
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At the moment now she has
got bigger her Achiever bed
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is the best thing we have got
in our house
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because it is really comfortable
for her [Isabella]
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and we can change her easily
because she is difficult to lift,
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and carry, it makes things
easier for us.
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Two things I'd probably say.
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Her p-pod chair was great.
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She had other chairs, a stander but
the p-pod seemed
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to be more comfortable, relaxing
and natural for Ruby.
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We had difficulties with her arms
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in some of the chairs.
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So, we loved the p-pod.
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The other one was the
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vibrocushion.
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It was more of a sensory
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piece of equipment.
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Ruby loved lying on it,
she was so comfortable
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and Sam would get on
with her.
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She could hear the music
and feel it.
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Ruby could feel it through
the cushion, that was
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one of her favourites.
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We got a lot of things
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For me it was the bath aid.
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That was a god send because
trying to hold a baby
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with no inner core strength and
trying to was
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a slippery child and trying
to get that child
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out of the bath has
been second to none.
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Also her p-pod is very useful.
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It gives Hope another perspective
to look around the room
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and to see things from
a different hight.
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That has been very useful.
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For Amelie one of the
biggest problems she has
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are her secretions.
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We've used various ways
in controlling it
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but when we got the
suction machine
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at first
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we rarely used it and it
sat in its box.
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But, over time it has become
one of the most
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important things.
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It really helps us maintain
the fact she is healthy,
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she isn't getting any chest infections.
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You grow to use it and you grow
to realise how important it is.
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At first it is a bit of a
worrying piece of kit to use,
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but then it becomes
second nature.
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When a child coughs, you
use the suction machine.
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It makes such a huge difference
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rather than have them
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coughing all the time.
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You can just help them get
rid of their secretions
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and they will be very comfortable.
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I think another important
piece of equipment
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is the wheelchair.
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They are just special prams.
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Amelie was in a regular
highstreet pram
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for longer than most children
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because we have a younger child
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so we had them in a double buggy.
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We had to adapt it in several ways
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and now we've had this pram for a year
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and she is very comfortable in it
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and we use it in the house as well.
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We can go anywhere with her,
on trains, taxis, cars.
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So, as soon as they start to
need more support
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with seating it is a very
important piece
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of equipment to get.
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It helps with their general health
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and you getting around giving
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them new experiences.
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I think at first, we were
resistant.
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Lots of other families were
about actually having the wheelchair
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because they are going
to look different.
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Well, they do, because they
are in a wheelchair
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and they have a condition
that requires it.
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I wish we had got one earlier
because I think she would
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have benefited a lot more
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because we use it for everything.
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We use it in the house as a
seating solution.
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It's definitely something to consider
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as soon as you can
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because it will make a big difference.