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