lucien oh that boy
our family has this like family phrase
that we always say instead just saying I
love you we always say I love you more
than a camel and so this was one of
those days where it was one of the
doctor’s appointments and it was just a
difficult appointment he wasn’t happy it
was painful and he looked at me and he’s
all mama I love you more than a camel
you know in its moments like that where
this child he changes everybody he meets
I came home from work and my husband
told me that Lucien was crawling
differently than he was before
so I looked at him and when I when I
looked at him he was dragging everything
from hip down kind of like a caterpillar
he would catapult himself forward so I
put him on my bed and I did a
head-to-toe assessment because I was in
nursing school at the time and when I
did that and I checked his diaper both
of his legs flopped out like a frog leg
completely so my initial thought was his
hips were dislocated because he was a
breech baby
so I bagged him all up and we went on
our way to the ER the ER while we were
there they thought that it was just
something with his hip like a viral
infection told us to take some motrin
and go home
so we went home that evening and he just
continued to get worse
I watched it moved from the legs all the
way up excuse me to his trunk he wasn’t
able to lift his head off of the bed
anymore they did every test they could
still no answer
I was upstairs on the Internet
and I was reading about the 25 children
in California and it was so parallel to
Lucien I immediately I really felt sick
because I think you know you wait so
long for a diagnosis and then one night
just through surfing on the Internet
I sure knew I had it we had known for a
year that his leg was not going to
return hearing the words was very
difficult but really it was just a
sentence Lucien has polio like syndrome
now we go forward
yeah just one
it’s just a little
from here on out it’s just kind of
getting him to adapt to living with a
disability
what’s important is Aleutians safety his
his happiness you know making sure that
Lucien doesn’t see himself disabled you
know so he’s expected to help with
laundry he does it differently than the
other kids he’ll help me at the dryer
we’ll do it at levels where he can
contribute but that way too he gets
self-worth which is important and his
you know mental well-being for a disease
that there’s only 25 people in
California with and it’s very unknown
it’s hard you know you don’t know if
you’re getting the right equipment is
this really what he needs and that’s
where the polio support group really
fell in for us you know they all have
the same braces Lucien has you know and
I’ve had parents literally pick up their
kids and walk away I think in Lucien had
polio and it was they didn’t hear
anything all they heard was polio and
they left you know and so now I said
well you know it’s a virus that like
polio but it’s not the live polio virus
all my kids are special every one of
them I love him to pieces this one I
he’s just got incredible Drive you know
he’ll be fine
yeah he’s gonna really make it
you
our family has this like family phrase
that we always say instead just saying I
love you we always say I love you more
than a camel and so this was one of
those days where it was one of the
doctor’s appointments and it was just a
difficult appointment he wasn’t happy it
was painful and he looked at me and he’s
all mama I love you more than a camel
you know in its moments like that where
this child he changes everybody he meets
I came home from work and my husband
told me that Lucien was crawling
differently than he was before
so I looked at him and when I when I
looked at him he was dragging everything
from hip down kind of like a caterpillar
he would catapult himself forward so I
put him on my bed and I did a
head-to-toe assessment because I was in
nursing school at the time and when I
did that and I checked his diaper both
of his legs flopped out like a frog leg
completely so my initial thought was his
hips were dislocated because he was a
breech baby
so I bagged him all up and we went on
our way to the ER the ER while we were
there they thought that it was just
something with his hip like a viral
infection told us to take some motrin
and go home
so we went home that evening and he just
continued to get worse
I watched it moved from the legs all the
way up excuse me to his trunk he wasn’t
able to lift his head off of the bed
anymore they did every test they could
still no answer
I was upstairs on the Internet
and I was reading about the 25 children
in California and it was so parallel to
Lucien I immediately I really felt sick
because I think you know you wait so
long for a diagnosis and then one night
just through surfing on the Internet
I sure knew I had it we had known for a
year that his leg was not going to
return hearing the words was very
difficult but really it was just a
sentence Lucien has polio like syndrome
now we go forward
yeah just one
it’s just a little
from here on out it’s just kind of
getting him to adapt to living with a
disability
what’s important is Aleutians safety his
his happiness you know making sure that
Lucien doesn’t see himself disabled you
know so he’s expected to help with
laundry he does it differently than the
other kids he’ll help me at the dryer
we’ll do it at levels where he can
contribute but that way too he gets
self-worth which is important and his
you know mental well-being for a disease
that there’s only 25 people in
California with and it’s very unknown
it’s hard you know you don’t know if
you’re getting the right equipment is
this really what he needs and that’s
where the polio support group really
fell in for us you know they all have
the same braces Lucien has you know and
I’ve had parents literally pick up their
kids and walk away I think in Lucien had
polio and it was they didn’t hear
anything all they heard was polio and
they left you know and so now I said
well you know it’s a virus that like
polio but it’s not the live polio virus
all my kids are special every one of
them I love him to pieces this one I
he’s just got incredible Drive you know
he’ll be fine
yeah he’s gonna really make it
you
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