--- In cerebral_palsy_support@yahoogroups.com, amanda martin
<im_the_one_for_trmpt@...> wrote:
>
> Hi Amanda
Thank you for your email. Everything is going well no more
seizures.And Moriah is doing real well.she is on a real strong med
tegretol. the side effects scare me.I worry about her but she is
doing so well , she may walk soon we ars hopeing before she is 2.She
sure is trying LOL .How long have you had cp?Are you doing ok?It
will be good to talk to someone who is been there done that you know
what i mean?I would love to talk if you like via email.If you would
like to see Moriah I have posted her pics. I think she is wonderful
but I guess Im a little bit in love with my sweet baby girl. We feel
that she is our gift from God.What part of the country are you
from ? We are from South Texas Right on the beach in Port Aransas.Be
Blessed Amanda . Looking foward to hearing from you...





I was reading you e mail about your little one and it breaks my
heart my name is amanda and I am 20 years old and I have cp if you
ever need anything or have questions just let me know
>
> have faith sometimes that is the only thing that gets me through
the day I am currently waiting on a call from a specialest at
childrens hospital columbus ohio in regards to wether or not I will
have to have knee replacement and to consider other options like I
said if u ever need anything I am a member of the group or if u just
wanna chat feel free
> amanda
>
> Elizabeth Brody <ebrody@...> wrote:
> I am so sorry for what you have been through. I guess we both
feel the
> impact of others lack of caring for our children. I am relieved to
hear
> Moriah is doing better. We are off to CA Sunday to start with the
> doctors at Stanford University's Lucille Packard Hospital for
Children.
> Rex id doing better just having me with him full time again.
>
> temp_mom wrote:
>
> > --It has been a horrible week!!!!! Moriah almost died. she was
> > eating and screamed a blood curdleing scream jerked back her head
> > and went unresponive. we called 911,there was so much neglect
with
> > the amblance's treatment of her it was unbleavable.the paramedic
was
> > angry about the way the call came in that he took it out on
Moriah.
> > He said that we called in cpr in progress itwas not. she was
> > breathing daaaa! you dont do cpr .. well to make a very long
story
> > short we live 30 miles from the hospital and he drove 50 miles an
> > hour over there Moriah stoped breathing right before we got there
> > and was put on life support But the good news is she is gona be
fine
> > and that paramedic doesnt have a job.The doctors say that she has
> > complex partial seizures.and she is on meds to comtrol them.WOW
your
> > nanny was abusing your little one.my gosh how awful. glad you
found
> > out.Good golly people can mess with us but they better not mess
with
> > our babies.thats why im not stoping till I have that guys
> > licenes.well its 3;30 am and kids will be up soon take care
> > wasIncerebral_palsy_support@yahoogroups.com
> > , Elizabeth Brody
> > wrote:
> > >
> > > Hi, We are hanging in. Our live in nanny was shaking Rex and we
> > caught
> > > it on tape last week. We called the Sheriff, who is not going
to
> > press
> > > criminal charges, too hard to prove criminal intent. It could
be
> > the
> > > cause of some of his regression and delays, but we can't prove
> > > anything. I want to scream, but can't. The good thing is that
> > she is
> > > gone, he has Dave and I and is loving all the attention.
> > > Rex gets PT, OT, and will begin Speech. They are going to do a
> > swallow
> > > study soon too. His water therapy is motivating him to move
> > towards
> > > toys we put just out of his reach or by passing him back and
forth
> > > between us. We also hold his sacrum and lower back at the
pelvis
> > while
> > > he is on his back and gently rock him to help his back and neck
> > loosen
> > > up. Massage for your daughter can't hurt and may help loosen
her
> > up, it
> > > really relaxes Rex and he falls into a deep restful sleep every
> > time.
> > > He gets all over body massage and some head massage called
cranial
> > > sacral. Rex will be 16 months on the 4th, he can be demanding
> > too. He
> > > is starting to imitate us and roll the ball back to us, so his
> > cognitive
> > > thinking is beginning to kick in finally. Our appointments at
> > Stanford
> > > are 2 weeks away, wish us luck!
> > > How are things with Moriah?
> > >
> > > temp_mom wrote:
> > >
> > > > Hi Elizabeth how you doing this fine HOT morning?Moriah is
doing
> > > > wellhad to have new AFO's because she grew out of her's in
less
> > than
> > > > 3 months.She has pt and speech only. but im very intrested
in the
> > > > water therapy. we are getting a pool this week is it
something we
> > > > can do or does it have to be a profesional? I have a friend
that
> > ia
> > > > a massage therpist for adults or would it matter? You
mentioned
> > oid
> > > > what kind? sorry so many questions Lol but if it works for
you
> > maybe
> > > > it will for Moriah.How old is Rex now Mriah is 20 months and
is a
> > > > pistol. she is a little delayed but is ver smart they say
she is
> > > > fine no MR . but we have some woor to do .look forw
> > > >
> > > > --- In cerebral_palsy_support@yahoogroups.com
> >
> > > > , Elizabeth
> > Brody
> > > > wrote:
> > > > >
> > > > > Hi, No he doesn't scissor his legs or stand on his tip
toes. He
> > > > puts
> > > > > most of his weight on his heels actually. I started taking
him
> > to
> > > > a
> > > > > message therapist this week who also does cranial sacral.
We
> > saw
> > > > an
> > > > > actual release of his neck muscles when she did this that
> > > > lengthened his
> > > > > neck then he slept very sound. We are also doing a ton of
water
> > > > therapy
> > > > > and added some essential oil use to his routine. We only
work
> > > > with him
> > > > > while he is comfortable with what we are doing, so far he
> > enjoys
> > > > all of
> > > > > these additional therapies. He is now getting 3 physical
> > therapy
> > > > > sessions a week too. How is your daughter doing? Have you
tried
> > > > water
> > > > > therapy? It seems to have made significant and quick
> > improvement
> > > > for Rex.
> > > > >
> > > > >
> > > > > temp_mom wrote:
> > > > >
> > > > > > --- In cerebral_palsy_support@yahoogroups.com
> >
> > > >
> > > > > > , Elizabeth
> > > > Brody
> > > > > > wrote:
> > > > > > >
> > > > > > >Wonderful news Elizabeth. You know all we have is faith
and
> > > > > > hope.Does REx sissor with his legs? Moriah does and tipie
> > toes so
> > > > > > when we get the feet flat she will be off.I"l keep
praying,
> > And
> > > > > > remember speek positives over your son and let no one
else
> > > > either.
> > > > > > He is going to do great!!!!!!!Thank you for the words of
> > > > > > encouragement, it means a lot. I have an
> > > > > > > update about our son Rex. He has been well for a couple
> > weeks
> > > > now
> > > > > > and
> > > > > > > is starting to army crawl, bear weight on his arms,
stand
> > > > leaning
> > > > > > on
> > > > > > > things for minutes straight, he pulls himself up with
only
> > a
> > > > > > little help
> > > > > > > for balance. He will even take steps if we urge him
while
> > we
> > > > hold
> > > > > > him.
> > > > > > > It looks like he will walk! His therapists are not
> > convinced he
> > > > > > has CP
> > > > > > > or mental retardation. He does not fit with what they
know
> > > > about
> > > > > > either
> > > > > > > and they have 50 years experience between the two of
them.
> > A
> > > > new
> > > > > > > neurologist saw him, spent over two hours with him and
did
> > not
> > > > > > think he
> > > > > > > has CP either. The original diagnosis was given after
a 5
> > > > minute
> > > > > > exam.
> > > > > > > The new doctor said he is at high risk for mental
> > retardation
> > > > due
> > > > > > to his
> > > > > > > head size. We will not know about this for sure until
he
> > is 5-6
> > > > > > years
> > > > > > > old and can take IQ tests. So even though he is still
> > delayed
> > > > > > things
> > > > > > > look more positive than they did a couple weeks ago.
> > > > > > >
> > > > > > > temp_mom wrote:
> > > > > > >
> > > > > > > > --- In cerebral_palsy_support@yahoogroups.com
> >
> > > >
> > > > > >
> > > > > > > > > 40yahoogroups.com>, "rex_mom"
> > > > > > > > wrote:
> > > > > > > > >HI.My daughter was born at 26 weeks, she had a lot
of
> > > > things to
> > > > > > > > over come she had a stage 3 brain bleed , a pda
ligation
> > on
> > > > her
> > > > > > > > heart, hydrosfolic. subgaleal shunt, and we were
told she
> > > > would
> > > > > > > > never funtion normally.At 13 months we were told she
had
> > > > cp.we
> > > > > > were
> > > > > > > > in total shock.BUT!!!! by the grace of God she is
doing
> > > > great NO
> > > > > > > > mental retardition. she is a little behind but is
doing
> > well
> > > > she
> > > > > > can
> > > > > > > > crawl and walk around everything holding on, we hope
she
> > will
> > > > > > walk
> > > > > > > > soon.What Im get around to is The Drs told us the
same
> > thing,
> > > > > > gloom
> > > > > > > > and doom!! and look were she is now at 20
months .They
> > can
> > > > say
> > > > > > > > anything but the truth is that they just DON't know
how
> > > > things
> > > > > > will
> > > > > > > > turn out.Honey we love these kids no matter what and
we
> > all
> > > > as
> > > > > > > > parents will do what ever we have to to help these
gifts
> > from
> > > > > > > > God.Have Faith and don't give up and find time each
day
> > for a
> > > > > > > > breather even a very short one it will help you cope
with
> > > > > > > > everything.Rember your little one will be the best
she
> > can be
> > > > > > what
> > > > > > > > ever that is for her or him. Take care and know you
are
> > not
> > > > > > alone.
> > > > > > > > > Hi,
> > > > > > > > > We got hit with the dagnosis of Hypotonia Cerebral
> > Palsy
> > > > today
> > > > > > for
> > > > > > > > our
> > > > > > > > > 14 month old, Rex. It's the first we heard this
was a
> > > > > > possibility
> > > > > > > > even
> > > > > > > > > though we knew he had low tone. He's been in Early
> > > > Intervention
> > > > > > > > > services since he was 3 months. Have any others
> > children
> > > > been
> > > > > > > > > diagnosed this early? What tests were run first?
Does
> > > > anyone
> > > > > > know
> > > > > > > > > how we can determine how severe it will be for him
and
> > when
> > > > > > we'll
> > > > > > > > know
> > > > > > > > > this? Do any others have retardation as well, the
> > doctor
> > > > > > mentioned
> > > > > > > > > this as a possibility? Anything you can share
would be
> > > > > > > > appreciated.
> > > > > > > > > I am scared of the unknown, and that is all there
is
> > right
> > > > now
> > > > > > for
> > > > > > > > me,
> > > > > > > > > too many questions and not any answers. The doctor
was
> > > > vague
> > > > > > > > except
> > > > > > > > > to paint a doom and gloom picture. He told us Rex
> > would be
> > > > > > > > dependant
> > > > > > > > > for life and most likely retarded too. I'm going to
> > get a
> > > > > > second
> > > > > > > > > opinion, so anything you can tell me will help
when I
> > meet
> > > > > > with the
> > > > > > > > > new doctor. What should I look for? What should I
ask
> > the
> > > > > > > > doctor?
> > > > > > > > > Are there any tests I need to have done? He's had
an
> > MRI
> > > > and
> > > > > > EEG,
> > > > > > > > > both normal. Thanks for your input.
> > > > > > > > > Elizabeth
> > > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > >
> > > > > >
> > > > > >
> > > > >
> > > >
> > > >
> > >
> >
> >
>
>
>
>
>
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