Since asking my original question about clinics and my
dissatisfaction about Duke, I have gotten many wonderful
suggestiions.  I did decide to give Duke one more chance and I spoke
dircetly with the coordinator of the clinic and voiced my concerns.
After having done this, I have been given a much higher standard
ofcare and my son has had appoinments made thata re relevant to his
needs at this point in time.  I would like to know of you parents
who have young SB children, how do you assist your toddler in his
mobility needs?  My son is 13 months old but is the heigt and weight
of a two year old.  He is getting to a point where he is wanting to
explore and cannot get around because he is such a large boy.  I
carry him here and there to expore but he is getting frustrated and
bored.  He can scoot himself backwards while prone but still canot
roll himself from tummy to back or back to tummy.  I would
appreciate any suggestions to assist in this matter!--





- In sbaofnc@yahoogroups.com, "kellie_moors" <kellie_moors@...>
wrote:
>
> As a pediatric nurse and the mother of a two year old with spina
> bifida I have had experiences with most of the hospitals and
> specialists in the eastern Nc area.  I delivered my son at
Duke,even
> going out of network with my insurance company to do it.  UNC was
in
> network,but after finding out they had been dropped from the MOM's
> study, and the fact that the pediatric neurosurgeon wouldn't meet
me
> before performing major surgery on my unborn child, I choose
Duke.
> And UNC is currently working without a PEDIATRIC neurosurgeon.
The
> have neurosurgeons, but as any specialist will tell you pediatrics
is
> a whole new world.  They are working on getting one back, but it
has
> been over a year from what my sources say.  Keep in mind that you
> will never hear good things about any medical situation, and no
> matter your choice is only as good as the information that you
have
> avialble. no matter what you choose, it's your child and your
> responsiblity to be their advocate. If you don't feel the doctor
is
> doing the best thing for them, tell them or find another doctor
who
> will listen. When it comes to children and their health the only
> stupid question is the one not asked.--- In
sbaofnc@yahoogroups.com,
> cynthia teresa <cteresausa2003@> wrote:
> >
> > Your absolutely right Lisa. My child has a regular check-up.
They
> do MRI's (Cranial and spine) on her regularly, and other test
> concerning about her SB. Thanks for sharing about your friend, it
> really helps new parents with SB. Each child is different from
each
> other, so, parents really need to be careful in their decision
when
> it comes to their children.
> >
> > Lisa <princess06770@> wrote:          I am sorry I have to
> respond to this. I had a friend that is no longer
> > with us because of a doctor not at Duke but another hospital
that
> did
> > not do a surgery on a patient that was NOT problems but the
doctor
> did
> > not find anything wrong with my friends shunt and it was indeed
her
> > shunt. She had a stroke and was under 35 years old. She was in
> college
> > about to graduate and was going to be a Psychologiest. She was
> having
> > headaches but the doctor told her it was NOT HER SHUNT and now
to
> day
> > she is 6 FOOT UNDER So please for your child even if she is not
> having
> > problems please have her checked out to see if she needs a shunt
> > because she could really need one and its just not showing up
and if
> > your child has never had a shunt she or he may not know what it
> feels
> > like to be having a headache that requires a shunt. I dont want
to
> see
> > you loose your child because of a shunt malfunction or a wished
I
> had
> > put a shunt in or she or he would still be with us today. I also
> want
> > to add if you dont get a shunt in soon enough it could cause your
> > child to be mentally retarded. I am sorry about the way I put
this
> but
> > I have lost a great deal of friends because of surgery or one
thing
> or
> > another because it was not done soon enough. I am an adult with
> spina
> > bifida and I have been through alot myself. I also know the
> importance
> > of seeing a doctor regularly and making sure my shunt is work
> > correctly among other things in the body with a person with
spina
> bifida.
> >
> > --- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@>
> wrote:
> > >
> > >
> > >
> > > I also had a bad impression about some doctors in Duke. My
child
> > also have a Spina Bifida, she will turn 4 this coming May 2007.
When
> > she was 2 months old, her doctor in Carolinas Medical Center in
> > Charlotte, NC want to do a Cranial Decompression because he said
> that
> > she has a Chiari Malformation II, so, we asked for a second
opinion
> > from Duke, sent my child's records and CT Scan and MRI's, to
make
> the
> > story short, the neurosurgeon there said that we need to let our
> > doctor here in Charlotte do the surgery As soon as possible or
else
> it
> > will damage my child's brain etc (he didn't even asked to see the
> > baby, he just decided to say do the procedure because he said
that
> my
> > child's doctor is known for being a good doctor). Anyway, we did
not
> > do what they want to do because we feel that the child doesn't
need
> it
> > because she's not symtomatic, even if she has it. Until now,
she's
> ok.
> > She's one of the smartest children in her school (She's in Pre-
K).
> > They even want to put a shunt
> > > on her when she was 10 days old because she's a SB baby but we
> > didn't let them put one, until now she's still shunt free.
> > >
> > > Sometimes, as a parent, we also need to think slowly and won't
let
> > what the doctors want to do to our children. Yes, they have a SB
it
> is
> > possible they need the surgery right away but sometimes if we
know
> > that the child is not symtomatic, we need to decide and tell the
> > doctor that we want to wait a little bit and see how the baby
does,
> > this is what we do to our child.
> > >
> > > Just want to share my experience, just an information for new
> > parent that doesn't know a lot about SB.
> > >
> > >
> > > Thanks,
> > > Cynthia
> > > Emily (L4-L5, cath every 4 hrs. shunt free, walking with a
walker
> > and without walker)
> > >
> > > Charlie Johnson <cmjcbt2@> wrote:
> > > I just noticed your response about Duke's Clinic, we have
> > had an excellent relationship with Duke regarding our daughter's
(6
> > years) issues with Spina Bifida and they have always been
willing to
> > help make sure everything was going okay. I was just curious as
to
> the
> > problems you were having, because that's odd.
> > >
> > > Stormie <counselorwillingham@> wrote: Does anyone know if there
> > is a Spina Bifida Clinic in Greenville NC?
> > > I am presently being seen at Duke's Clinic but quite frankly I
a
> have
> > > been unimpressed with the care he has recieved in comparison
to
> the
> > > care he had when we were in Tn at Vanderbilt's clinic. I have
> heard
> > > that there may be a clinic in Greenville and would like to get
a
> > > contact number to see about having his care transferred there.
> > > >
> > > >
> > > > ---------------------------------
> > > > Sucker-punch spam with award-winning protection.
> > > > Try the free Yahoo! Mail Beta.
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > Charlie Johnson
> > > cmjcbt2@
> > >
> > > ---------------------------------
> > > Need a quick answer? Get one in minutes from people who know.
Ask
> > your question on Yahoo! Answers.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Finding fabulous fares is fun.
> > > Let Yahoo! FareChase search your favorite travel sites to find
> > flight and hotel bargains.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call
rates.
> >
> > [Non-text portions of this message have been removed]
> >
>

As a pediatric nurse and the mother of a two year old with spina
bifida I have had experiences with most of the hospitals and
specialists in the eastern Nc area.  I delivered my son at Duke,even
going out of network with my insurance company to do it.  UNC was in
network,but after finding out they had been dropped from the MOM's
study, and the fact that the pediatric neurosurgeon wouldn't meet me
before performing major surgery on my unborn child, I choose Duke.
And UNC is currently working without a PEDIATRIC neurosurgeon.  The
have neurosurgeons, but as any specialist will tell you pediatrics is
a whole new world.  They are working on getting one back, but it has
been over a year from what my sources say.  Keep in mind that you
will never hear good things about any medical situation, and no
matter your choice is only as good as the information that you have
avialble. no matter what you choose, it's your child and your
responsiblity to be their advocate. If you don't feel the doctor is
doing the best thing for them, tell them or find another doctor who
will listen. When it comes to children and their health the only
stupid question is the one not asked.--- In sbaofnc@yahoogroups.com,
cynthia teresa <cteresausa2003@...> wrote:
>
> Your absolutely right Lisa. My child has a regular check-up. They
do MRI's (Cranial and spine) on her regularly, and other test
concerning about her SB. Thanks for sharing about your friend, it
really helps new parents with SB. Each child is different from each
other, so, parents really need to be careful in their decision when
it comes to their children.
>
> Lisa <princess06770@...> wrote:          I am sorry I have to
respond to this. I had a friend that is no longer
> with us because of a doctor not at Duke but another hospital that
did
> not do a surgery on a patient that was NOT problems but the doctor
did
> not find anything wrong with my friends shunt and it was indeed her
> shunt. She had a stroke and was under 35 years old. She was in
college
> about to graduate and was going to be a Psychologiest. She was
having
> headaches but the doctor told her it was NOT HER SHUNT and now to
day
> she is 6 FOOT UNDER So please for your child even if she is not
having
> problems please have her checked out to see if she needs a shunt
> because she could really need one and its just not showing up and if
> your child has never had a shunt she or he may not know what it
feels
> like to be having a headache that requires a shunt. I dont want to
see
> you loose your child because of a shunt malfunction or a wished I
had
> put a shunt in or she or he would still be with us today. I also
want
> to add if you dont get a shunt in soon enough it could cause your
> child to be mentally retarded. I am sorry about the way I put this
but
> I have lost a great deal of friends because of surgery or one thing
or
> another because it was not done soon enough. I am an adult with
spina
> bifida and I have been through alot myself. I also know the
importance
> of seeing a doctor regularly and making sure my shunt is work
> correctly among other things in the body with a person with spina
bifida.
>
> --- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@>
wrote:
> >
> >
> >
> > I also had a bad impression about some doctors in Duke. My child
> also have a Spina Bifida, she will turn 4 this coming May 2007. When
> she was 2 months old, her doctor in Carolinas Medical Center in
> Charlotte, NC want to do a Cranial Decompression because he said
that
> she has a Chiari Malformation II, so, we asked for a second opinion
> from Duke, sent my child's records and CT Scan and MRI's, to make
the
> story short, the neurosurgeon there said that we need to let our
> doctor here in Charlotte do the surgery As soon as possible or else
it
> will damage my child's brain etc (he didn't even asked to see the
> baby, he just decided to say do the procedure because he said that
my
> child's doctor is known for being a good doctor). Anyway, we did not
> do what they want to do because we feel that the child doesn't need
it
> because she's not symtomatic, even if she has it. Until now, she's
ok.
> She's one of the smartest children in her school (She's in Pre-K).
> They even want to put a shunt
> > on her when she was 10 days old because she's a SB baby but we
> didn't let them put one, until now she's still shunt free.
> >
> > Sometimes, as a parent, we also need to think slowly and won't let
> what the doctors want to do to our children. Yes, they have a SB it
is
> possible they need the surgery right away but sometimes if we know
> that the child is not symtomatic, we need to decide and tell the
> doctor that we want to wait a little bit and see how the baby does,
> this is what we do to our child.
> >
> > Just want to share my experience, just an information for new
> parent that doesn't know a lot about SB.
> >
> >
> > Thanks,
> > Cynthia
> > Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker
> and without walker)
> >
> > Charlie Johnson <cmjcbt2@> wrote:
> > I just noticed your response about Duke's Clinic, we have
> had an excellent relationship with Duke regarding our daughter's (6
> years) issues with Spina Bifida and they have always been willing to
> help make sure everything was going okay. I was just curious as to
the
> problems you were having, because that's odd.
> >
> > Stormie <counselorwillingham@> wrote: Does anyone know if there
> is a Spina Bifida Clinic in Greenville NC?
> > I am presently being seen at Duke's Clinic but quite frankly I a
have
> > been unimpressed with the care he has recieved in comparison to
the
> > care he had when we were in Tn at Vanderbilt's clinic. I have
heard
> > that there may be a clinic in Greenville and would like to get a
> > contact number to see about having his care transferred there.
> > >
> > >
> > > ---------------------------------
> > > Sucker-punch spam with award-winning protection.
> > > Try the free Yahoo! Mail Beta.
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> > Charlie Johnson
> > cmjcbt2@
> >
> > ---------------------------------
> > Need a quick answer? Get one in minutes from people who know. Ask
> your question on Yahoo! Answers.
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Finding fabulous fares is fun.
> > Let Yahoo! FareChase search your favorite travel sites to find
> flight and hotel bargains.
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
>
> ---------------------------------
> Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.
>
> [Non-text portions of this message have been removed]
>

if anybody is good with dealing with SSI i would
really like to talk to you one on one via email.  i am
having some issues and could use some help.

brandon

My daughter has been followed at UNC since she was born there
2/2000. The clinic is held at the Physical Medicine and
Rehabilitation clinic and is held Tuesdays and Thursdays. The lead
is Dr. Joshua Alexander, his specialty is Neurology I think, and the
orthopedic doctor is Dr. Campion. I have been very happy with our
care there. My daughter had hip surgery last spring. I feel the
decision to do the procedure was well-thought and carefully
explained before. Now that she has recovered, I can actually see the
benefits. We did go to the ER with an UTI in 2002 and got treated
too agressively (put on IV antibiotics for 10 days) by an intern,
but you live and learn. I agree about having as much knowledge as
you can and advocating for your child's care. But, ultimately, you
do feel like it is better to be safe than sorry about treating
serious medical conditions like hydrocephalus and you want to be
able to trust your physician. I feel like I know who the doctors are
there I can trust to really know what's going on. And I can get in
touch with them when I need to - that's what's important.

I am a single parent and my only child was born in 2000 with SB at
L4-L5, she has a shunt and caths every 4, uses a walker and is
working (a little) with crutches.

Your absolutely right Lisa. My child has a regular check-up. They do MRI's
(Cranial and spine) on her regularly, and other test concerning about her SB.
Thanks for sharing about your friend, it really helps new parents with SB. Each
child is different from each other, so, parents really need to be careful in
their decision when it comes to their children.

Lisa <princess06770@...> wrote:          I am sorry I have to respond to
this. I had a friend that is no longer
with us because of a doctor not at Duke but another hospital that did
not do a surgery on a patient that was NOT problems but the doctor did
not find anything wrong with my friends shunt and it was indeed her
shunt. She had a stroke and was under 35 years old. She was in college
about to graduate and was going to be a Psychologiest. She was having
headaches but the doctor told her it was NOT HER SHUNT and now to day
she is 6 FOOT UNDER So please for your child even if she is not having
problems please have her checked out to see if she needs a shunt
because she could really need one and its just not showing up and if
your child has never had a shunt she or he may not know what it feels
like to be having a headache that requires a shunt. I dont want to see
you loose your child because of a shunt malfunction or a wished I had
put a shunt in or she or he would still be with us today. I also want
to add if you dont get a shunt in soon enough it could cause your
child to be mentally retarded. I am sorry about the way I put this but
I have lost a great deal of friends because of surgery or one thing or
another because it was not done soon enough. I am an adult with spina
bifida and I have been through alot myself. I also know the importance
of seeing a doctor regularly and making sure my shunt is work
correctly among other things in the body with a person with spina bifida.

--- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@...> wrote:
>
>
>
> I also had a bad impression about some doctors in Duke. My child
also have a Spina Bifida, she will turn 4 this coming May 2007. When
she was 2 months old, her doctor in Carolinas Medical Center in
Charlotte, NC want to do a Cranial Decompression because he said that
she has a Chiari Malformation II, so, we asked for a second opinion
from Duke, sent my child's records and CT Scan and MRI's, to make the
story short, the neurosurgeon there said that we need to let our
doctor here in Charlotte do the surgery As soon as possible or else it
will damage my child's brain etc (he didn't even asked to see the
baby, he just decided to say do the procedure because he said that my
child's doctor is known for being a good doctor). Anyway, we did not
do what they want to do because we feel that the child doesn't need it
because she's not symtomatic, even if she has it. Until now, she's ok.
She's one of the smartest children in her school (She's in Pre-K).
They even want to put a shunt
> on her when she was 10 days old because she's a SB baby but we
didn't let them put one, until now she's still shunt free.
>
> Sometimes, as a parent, we also need to think slowly and won't let
what the doctors want to do to our children. Yes, they have a SB it is
possible they need the surgery right away but sometimes if we know
that the child is not symtomatic, we need to decide and tell the
doctor that we want to wait a little bit and see how the baby does,
this is what we do to our child.
>
> Just want to share my experience, just an information for new
parent that doesn't know a lot about SB.
>
>
> Thanks,
> Cynthia
> Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker
and without walker)
>
> Charlie Johnson <cmjcbt2@...> wrote:
> I just noticed your response about Duke's Clinic, we have
had an excellent relationship with Duke regarding our daughter's (6
years) issues with Spina Bifida and they have always been willing to
help make sure everything was going okay. I was just curious as to the
problems you were having, because that's odd.
>
> Stormie <counselorwillingham@...> wrote: Does anyone know if there
is a Spina Bifida Clinic in Greenville NC?
> I am presently being seen at Duke's Clinic but quite frankly I a have
> been unimpressed with the care he has recieved in comparison to the
> care he had when we were in Tn at Vanderbilt's clinic. I have heard
> that there may be a clinic in Greenville and would like to get a
> contact number to see about having his care transferred there.
> >
> >
> > ---------------------------------
> > Sucker-punch spam with award-winning protection.
> > Try the free Yahoo! Mail Beta.
> >
> > [Non-text portions of this message have been removed]
> >
>
> Charlie Johnson
> cmjcbt2@...
>
> ---------------------------------
> Need a quick answer? Get one in minutes from people who know. Ask
your question on Yahoo! Answers.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
> Finding fabulous fares is fun.
> Let Yahoo! FareChase search your favorite travel sites to find
flight and hotel bargains.
>
> [Non-text portions of this message have been removed]
>






---------------------------------
Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Non-text portions of this message have been removed]

I am sorry I have to respond to this. I had a friend that is no longer
with us because of a doctor not at Duke but another hospital that did
not do a surgery on a patient that was NOT problems but the doctor did
not find anything wrong with my friends shunt and it was indeed her
shunt. She had a stroke and was under 35 years old. She was in college
about to graduate and was going to be a Psychologiest. She was having
headaches but the doctor told her it was NOT HER SHUNT and now to day
she is 6 FOOT UNDER So please for your child even if she is not having
problems please have her checked out to see if she needs a shunt
because she could really need one and its just not showing up and if
your child has never had a shunt she or he may not know what it feels
like to be having a headache that requires a shunt. I dont want to see
you loose your child because of a shunt malfunction or a wished I had
put a shunt in or she or he would still be with us today. I also want
to add if you dont get a shunt in soon enough it could cause your
child to be mentally retarded. I am sorry about the way I put this but
I have lost a great deal of friends because of surgery or one thing or
another because it was not done soon enough. I am an adult with spina
bifida and I have been through alot myself. I also know the importance
of seeing a doctor regularly and making sure my shunt is work
correctly among other things in the body with a person with spina bifida.







--- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@...> wrote:
>
>
>
>   I also had a bad impression about some doctors in Duke. My child
also have a Spina Bifida, she will turn 4 this coming May 2007. When
she was 2 months old, her doctor in Carolinas Medical Center in
Charlotte, NC want to do a Cranial Decompression because he said that
she has a Chiari Malformation II, so, we asked for a second opinion
from Duke, sent my child's records and CT Scan and MRI's, to make the
story short, the neurosurgeon there said that we need to let our
doctor here in Charlotte do the surgery As soon as possible or else it
will damage my child's brain etc (he didn't even asked to see the
baby, he just decided to say do the procedure because he said that my
child's doctor is known for being a good doctor). Anyway, we did not
do what they want to do because we feel that the child doesn't need it
because she's not symtomatic, even if she has it. Until now, she's ok.
She's one of the smartest children in her school (She's in Pre-K).
They even want to put a shunt
>  on her when she was 10 days old because she's a SB baby but we
didn't let them put one, until now she's still shunt free.
>
>   Sometimes, as a parent, we also need to think slowly and won't let
what the doctors want to do to our children. Yes, they have a SB it is
possible they need the surgery right away but sometimes if we know
that the child is not symtomatic, we need to decide and tell the
doctor that  we want to  wait a little bit and see how the baby does,
this is what we do to our child.
>
>   Just want to share my experience, just an information for new
parent that doesn't know a lot about SB.
>
>
>   Thanks,
>   Cynthia
>   Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker
and without walker)
>
> Charlie Johnson <cmjcbt2@...> wrote:
>           I just noticed your response about Duke's Clinic, we have
had an excellent relationship with Duke regarding our daughter's (6
years) issues with Spina Bifida and they have always been willing to
help make sure everything was going okay. I was just curious as to the
problems you were having, because that's odd.
>
> Stormie <counselorwillingham@...> wrote: Does anyone know if there
is a Spina Bifida Clinic in Greenville NC?
> I am presently being seen at Duke's Clinic but quite frankly I a have
> been unimpressed with the care he has recieved in comparison to the
> care he had when we were in Tn at Vanderbilt's clinic. I have heard
> that there may be a clinic in Greenville and would like to get a
> contact number to see about having his care transferred there.
> >
> >
> > ---------------------------------
> > Sucker-punch spam with award-winning protection.
> > Try the free Yahoo! Mail Beta.
> >
> > [Non-text portions of this message have been removed]
> >
>
> Charlie Johnson
> cmjcbt2@...
>
> ---------------------------------
> Need a quick answer? Get one in minutes from people who know. Ask
your question on Yahoo! Answers.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
> Finding fabulous fares is fun.
> Let Yahoo! FareChase search your favorite travel sites to find
flight and hotel bargains.
>
> [Non-text portions of this message have been removed]
>

I completely agree with you.  As a parent you have to keep up with
the latest information and become as educated as possible in the
condition and medical implications and spects of the disease.  I have
had to take a stand with issues as well.  I got a second opinion from
his previous doctors at Vandy and they concurred with my preferred
approach so I made a choice to ignore the doctor here and go with the
information I have and the doctors I have more confdence in.  Duke's
Clinic appears to have too many patients and they canot realy know a
paitient seeing them 4 times a year.  I am sorry, but as a child
grows ALOT can change physiologically in a months time and if you
don't ever pick up the childs medical history and become familar with
it you canot make the best decisions.  They ask me every time if he
has had a shunt replacement.  If they look ed in his records they
would not have to ask me that or when or what kind.  If anyone has
the name and number of the Greenville Clinic or any other clinic you
feel may do a beter job please send me the info to my email address.
counselorwillingham@...!! Best of luck to each of you and your
loved ones!!






--- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@...>
wrote:
>
>
>
>   I also had a bad impression about some doctors in Duke. My child
also have a Spina Bifida, she will turn 4 this coming May 2007. When
she was 2 months old, her doctor in Carolinas Medical Center in
Charlotte, NC want to do a Cranial Decompression because he said that
she has a Chiari Malformation II, so, we asked for a second opinion
from Duke, sent my child's records and CT Scan and MRI's, to make the
story short, the neurosurgeon there said that we need to let our
doctor here in Charlotte do the surgery As soon as possible or else
it will damage my child's brain etc (he didn't even asked to see the
baby, he just decided to say do the procedure because he said that my
child's doctor is known for being a good doctor). Anyway, we did not
do what they want to do because we feel that the child doesn't need
it because she's not symtomatic, even if she has it. Until now, she's
ok. She's one of the smartest children in her school (She's in Pre-
K). They even want to put a shunt
>  on her when she was 10 days old because she's a SB baby but we
didn't let them put one, until now she's still shunt free.
>
>   Sometimes, as a parent, we also need to think slowly and won't
let what the doctors want to do to our children. Yes, they have a SB
it is possible they need the surgery right away but sometimes if we
know that the child is not symtomatic, we need to decide and tell the
doctor that  we want to  wait a little bit and see how the baby does,
this is what we do to our child.
>
>   Just want to share my experience, just an information for new
parent that doesn't know a lot about SB.
>
>
>   Thanks,
>   Cynthia
>   Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker
and without walker)
>
> Charlie Johnson <cmjcbt2@...> wrote:
>           I just noticed your response about Duke's Clinic, we have
had an excellent relationship with Duke regarding our daughter's (6
years) issues with Spina Bifida and they have always been willing to
help make sure everything was going okay. I was just curious as to
the problems you were having, because that's odd.
>
> Stormie <counselorwillingham@...> wrote: Does anyone know if there
is a Spina Bifida Clinic in Greenville NC?
> I am presently being seen at Duke's Clinic but quite frankly I a
have
> been unimpressed with the care he has recieved in comparison to the
> care he had when we were in Tn at Vanderbilt's clinic. I have heard
> that there may be a clinic in Greenville and would like to get a
> contact number to see about having his care transferred there.
> >
> >
> > ---------------------------------
> > Sucker-punch spam with award-winning protection.
> > Try the free Yahoo! Mail Beta.
> >
> > [Non-text portions of this message have been removed]
> >
>
> Charlie Johnson
> cmjcbt2@...
>
> ---------------------------------
> Need a quick answer? Get one in minutes from people who know. Ask
your question on Yahoo! Answers.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
> Finding fabulous fares is fun.
> Let Yahoo! FareChase search your favorite travel sites to find
flight and hotel bargains.
>
> [Non-text portions of this message have been removed]
>

I also had a bad impression about some doctors in Duke. My child also have a
Spina Bifida, she will turn 4 this coming May 2007. When she was 2 months old,
her doctor in Carolinas Medical Center in Charlotte, NC want to do a Cranial
Decompression because he said that she has a Chiari Malformation II, so, we
asked for a second opinion from Duke, sent my child's records and CT Scan and
MRI's, to make the story short, the neurosurgeon there said that we need to let
our doctor here in Charlotte do the surgery As soon as possible or else it will
damage my child's brain etc (he didn't even asked to see the baby, he just
decided to say do the procedure because he said that my child's doctor is known
for being a good doctor). Anyway, we did not do what they want to do because we
feel that the child doesn't need it because she's not symtomatic, even if she
has it. Until now, she's ok. She's one of the smartest children in her school
(She's in Pre-K). They even want to put a shunt
  on her when she was 10 days old because she's a SB baby but we didn't let them
put one, until now she's still shunt free.

   Sometimes, as a parent, we also need to think slowly and won't let what the
doctors want to do to our children. Yes, they have a SB it is possible they need
the surgery right away but sometimes if we know that the child is not
symtomatic, we need to decide and tell the doctor that  we want to  wait a
little bit and see how the baby does, this is what we do to our child.

   Just want to share my experience, just an information for new parent that
doesn't know a lot about SB.


   Thanks,
   Cynthia
   Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker and without
walker)

Charlie Johnson <cmjcbt2@...> wrote:
           I just noticed your response about Duke's Clinic, we have had an
excellent relationship with Duke regarding our daughter's (6 years) issues with
Spina Bifida and they have always been willing to help make sure everything was
going okay. I was just curious as to the problems you were having, because
that's odd.

Stormie <counselorwillingham@...> wrote: Does anyone know if there is a
Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic. I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
> Try the free Yahoo! Mail Beta.
>
> [Non-text portions of this message have been removed]
>

Charlie Johnson
cmjcbt2@...

---------------------------------
Need a quick answer? Get one in minutes from people who know. Ask your question
on Yahoo! Answers.

[Non-text portions of this message have been removed]






---------------------------------
Finding fabulous fares is fun.
Let Yahoo! FareChase search your favorite travel sites to find flight and hotel
bargains.

[Non-text portions of this message have been removed]

I just noticed your response about Duke's Clinic, we have had an excellent
relationship with Duke regarding our daughter's (6 years) issues with Spina
Bifida and they have always been willing to help make sure everything was going
okay.  I was just curious as to the problems you were having, because that's
odd.

Stormie <counselorwillingham@...> wrote:          Does anyone know if
there is a Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic. I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
> Try the free Yahoo! Mail Beta.
>
> [Non-text portions of this message have been removed]
>






Charlie Johnson
cmjcbt2@...



---------------------------------
Need a quick answer? Get one in minutes from people who know. Ask your question
on Yahoo! Answers.

[Non-text portions of this message have been removed]

The hospital in Chapel Hill is North Carolina Memorial. It's on the
campus of UNC.I was a patient there in 1988. I was in my early
twenties at the time. They were fascinated by me because I had more
abilities than any other SB survivor they'd seen at the time.

Todd Greene
Straitjacket Chillers:
     Get Strapped In . . .
http://www.toddmichaelgreene.com
http://anewnovelistsjourney.blogspot.com
http://messagesfromtheasylum.blogspot.com

--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...> wrote:
I do believe there is one in Chapel Hill as well.  I just
> don't know thee name of the hospital.
>
>

I have been taking my son to Duke also and we live in Union County too. I
didn't realize there was a SB Clinic in Mecklenburg, I heard that it was
stopped awhile back. Where is it? And who are the doctors? How often do they
have clinic? What hospital are they based out of? I am interested if he will
get better care closer to home?

Thank you,

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of

There is one SB Clinic in Greenville, NC. I don't take my daughter here
because we are from Union County, I take her in Mecklenburg County. Anyway,
below is the address and name of the clinic: Hope this will help!

There is one SB Clinic in Greenville, NC. I don't take my daughter here because
we are from Union County, I take her in Mecklenburg County. Anyway, below is the
address and name of the clinic: Hope this will help!

   East Carolina University, Spina Bifida Clinic
   ECU-SOM, Dept. Phys Med Rehab
   600 Moye Blvd.
   Greenville, NC 27858
   Phone No. 252-847-6606


Stormie <counselorwillingham@...> wrote:
           Does anyone know if there is a Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic. I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
> Try the free Yahoo! Mail Beta.
>
> [Non-text portions of this message have been removed]
>






---------------------------------
We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

[Non-text portions of this message have been removed]

We're driving down to the Shriners Clinic in
Greenville, SC from Asheville, NC. We haven't actually
attended a clinic there yet, but I can tell you from
experience that the Shriners Clinic in Tampa is
awesome, and I would think all of the Shriners
Hospitals would have a good clinic.

AL.
Al & Karen
(Ana 8yo w/SB, Gracie 3yo, Benjamin 2yo)

--- Stormie <counselorwillingham@...> wrote:

> Does anyone know if there is a Spina Bifida Clinic
> in Greenville NC?
> I am presently being seen at Duke's Clinic but quite
> frankly I a have
> been unimpressed with the care he has recieved in
> comparison to the
> care he had when we were in Tn at Vanderbilt's
> clinic.  I have heard
> that there may be a clinic in Greenville and would
> like to get a
> contact number to see about having his care
> transferred there.
> >
> >
> > ---------------------------------
> > Sucker-punch spam with award-winning protection.
> >  Try the free Yahoo! Mail Beta.
> >
> > [Non-text portions of this message have been
> removed]
> >
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>

I don’t know about Greenville, NC but there is in Greeneville, SC.
Shriner’s.  Also, we go to SB clinic at Wake Forest Univ. Baptist Medical
Center in W-S.  I do believe there is one in Chapel Hill as well.  I just
don’t know thee name of the hospital.  If you want contact info for WFUBMC
let me know.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Stormie
Sent: Tuesday, January 23, 2007 5:24 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Question about clinics in NC?



Does anyone know if there is a Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic. I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
> Try the free Yahoo! Mail Beta.
>
> [Non-text portions of this message have been removed]
>





[Non-text portions of this message have been removed]

Does anyone know if there is a Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic.  I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
>
> ---------------------------------
> Sucker-punch spam with award-winning protection.
>  Try the free Yahoo! Mail Beta.
>
> [Non-text portions of this message have been removed]
>

We live in Whitsett, NC.  We now have a daughter who was born Jan. 9 with Spina
Bifida.  Because we knew through prenatal testing, we were referred to Duke.  We
are learning the process of who we talk to and also how to receive services. 
Duke has been excellent in helping us understand what we need to do to help care
for our little girl.  I have learned that Duke has a myleo clinic once a month
where we will continue to return for follow up visits with the team of drs. that
are following her.  So far we know we need to cath every 6 hrs.  It is my
understanding that her nerves are still in shock from her surgery to close her
back so we really won't know what nerves have been affected until later on.  She
also had a shunt surgery this past Tuesday.  She is doing wonderful and we are
expected to be discharged from the hospital today if all continues to go well.
   Feel free to contact me as well!!  I'm also a prek teacher in Guilford county
schools and am somewhat familiar with preschool exceptional children's
department.
   Marie


---------------------------------
Sucker-punch spam with award-winning protection.
  Try the free Yahoo! Mail Beta.

[Non-text portions of this message have been removed]

My daughter has Spina bifida Occulta.... There seems to be so much
debating going on about whether
TCS (tethered cord syndrome) or LMC (lipomyelomeningocele)
are an actual form of SB. All I know is that when my daughter was a
week old I was told she had Spina Bifida Occulta. My daughter has
had surgery to detether her spinal cord at 3 months of age. She has
nuerogenic bladder and bowel, we cath every 4 hours and we do a
regimine of fiber and suppositories to train her bowels. She has leg
length discrepancies and wears an AFO on her left leg. Her left calf
lacks muscle tone. She also has a large hemangioma on her left hip
and buttock and has a skin tag and the dimples on her buttocks. I
don,t know if she is eligible for CAP-C services as I really don't
know what they are. I am not sure what kind of support groups there
are in my area, but we did go the Guilford County Exceptional
Childrens office today and fill out forms to have my daughter
evaluated for an IEP. She turned 4 in December. What I would really
like is to have some friends here that I can support emotionally as
well as receiving support from them.
Faith


--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...>
wrote:
>
> We have CAP-C services in Forsyth County and I can get you the
name of our
> cap manager and her phone number.  I imagine she can get you to
the right
> number for High Point.  CAP seems to be held on to tightly around
here and
> no one knows about it.  Most of the time Medicaid offices haven't
heard of
> it either.
>
> Susan
>
>
>
>   _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> Mari Pedersen
> Sent: Thursday, January 18, 2007 9:55 PM
> To: sbaofnc@yahoogroups.com
> Subject: RE: [SBAofNC] New to NC
>
>
>
> Al,
>
> I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We
live in NC
> too. Can you explain what you said about where to get started with
services.
> I am not familiar with the acronyms that you used, or even where
to get
> started calling.
>
> Mari
>
> -----Original Message-----
> From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> [mailto:sbaofnc@yahoogroups <mailto:sbaofnc%
40yahoogroups.com> .com] On
> Behalf Of
> Alfred Lyons
> Sent: Wednesday, January 17, 2007 2:30 PM
> To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> Subject: Re: [SBAofNC] New to NC
>
> Hi Faith,
>
> We are new to NC too (since August 2006), and living
> in Asheville. I am unsure how close that is to
> Highpoint. We are still linking to services. We go to
> Shriners Hospital in Greenville, SC. Here in
> Asheville, Mission Hospital has a good parent support
> group for families of special kids (not necessarily
> SB). We called Western Highlands (NC local management
> entity) for help getting linked to services, and to
> get placed on the CAP Waiver wait list. I don't know
> who the LME is for High Point.
>
> Al Lyons
> Al & Karen
> Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

We have CAP-C services in Forsyth County and I can get you the name of our
cap manager and her phone number.  I imagine she can get you to the right
number for High Point.  CAP seems to be held on to tightly around here and
no one knows about it.  Most of the time Medicaid offices haven’t heard of
it either.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Thursday, January 18, 2007 9:55 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] New to NC



Al,

I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We live in NC
too. Can you explain what you said about where to get started with services.
I am not familiar with the acronyms that you used, or even where to get
started calling.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
[mailto:sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com] On
Behalf Of
Alfred Lyons
Sent: Wednesday, January 17, 2007 2:30 PM
To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
Subject: Re: [SBAofNC] New to NC

Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)





[Non-text portions of this message have been removed]

Al,

I have an 8 yo son with SB, neurogenic bladder and bowel, etc. We live in NC
too. Can you explain what you said about where to get started with services.
I am not familiar with the acronyms that you used, or even where to get
started calling.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Alfred Lyons
Sent: Wednesday, January 17, 2007 2:30 PM
To: sbaofnc@yahoogroups.com
Subject: Re: [SBAofNC] New to NC

Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)

Hi Faith,

   My name is Cynthia, I also have a 3 1/2 child with (Spina Bifida)  bladder and
Bowel
   movement problems.

   We live in Monroe, NC. I would love to exchange emails with you about our
children.

   Cynthia

Faith <fazedva@...> wrote:
           Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith






---------------------------------
We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

[Non-text portions of this message have been removed]

Hi,
I have SB at L4.

Lisa


[Non-text portions of this message have been removed]

Hi!  We live near Winston-Salem.  I have an 11 year old daughter with SB L3.

Susan



   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Faith
Sent: Wednesday, January 17, 2007 12:21 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New to NC



Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith







[Non-text portions of this message have been removed]

Faith,
Hey!  I'm a 29 year old female with spina bifida living in the Winston-
Salem, NC.  I know that Baptist Hospital here in Winston-Salem has a
SB clinic as well as a VR counselor who could probably connect you
with some other services.  Let me know if I can be of any more help.

Lisa Pubantz


[Non-text portions of this message have been removed]

<>Spina Bifida Association Updates<>

1. SBA 34th Annual Conference in Louisville Kentucky
June 24 - June 27, 2007
Register Online Now

SBA's Annual Conference has earned its place as the
world's premier conference serving the Spina Bifida
Community. Our presence in Louisville - site of SBA's
largest conference a decade ago - will add to the
excitement of the experience for all who attend.

Home to the Kentucky Derby and featuring over 980
miles of the Ohio River, Louisville is within a day's
drive of half of the nation's population and easily
accessible by air.

Register Now!
http://registration.sitesolutionsworldwide.com/synergy/v_1_/home/?id=118

Who Should Attend?
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Parents of Children with Spina Bifida: Learn
innovative ways to help your children grow into
independent and active adults.
Children with Spina Bifida: Experience the fun of
Kids!Camp. Learn how much you can accomplish from
other kids while having the time of your life!
Medical Professionals: Sharpen your clinical skills
and gain insight into cutting edge therapies.
Group Member Leadership: Network with other leaders
while attending helpful workshops designed to increase
rewards and ease challenges.
Register online today! Or call 1-800-621-3141 to have
a packet sent to you.

2. Sale! Health Guide for Adults Living with Spina
Bifida

The Spina Bifida Association (SBA) is proud to offer
its “Health Guide for Adults Living with Spina
Bifida.”

Providing health information and resources to help
manage health and prevent further complications, this
special discounted bulk rate pricing* is available for
a limited time only.

0 – 10 copies     $9.99 each
11 – 100 copies   $8.99 each
100 or more copies  $7.99 each

Please visit the SBA Web site at
www.sbaa.org/adulthealthguide for more information or
call 1-800-621-3141 to place your order today.

* Offer expires 3/15/07. Price does not include
shipping and handling.

3. NEW! Health Guide For Parents of Children Living
with Spina Bifida

The Spina Bifida Association (SBA) is proud to debut
the new "Health Guide for Parents of Children Living
with Spina Bifida."

Order your advance copy today at the discounted rate
of $9.99*. This need-to-have guide covers Spina Bifida
health issues and information from newborn to
teenager.

Please visit the SBA Web site
www.sbaa.org/parenthealthguide for more information or
call 1-800-621-3141 to reserve your copy today.

* Offer expires 2/16/07.


<>Please pass these updates along!<>
<>For more information on the Spina Bifida
Association, please visit www.sbaa.org.<>




________________________________________________________________________________\
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Hi Faith,

We are new to NC too (since August 2006), and living
in Asheville. I am unsure how close that is to
Highpoint. We are still linking to services. We go to
Shriners Hospital in Greenville, SC. Here in
Asheville, Mission Hospital has a good parent support
group for families of special kids (not necessarily
SB). We called Western Highlands (NC local management
entity) for help getting linked to services, and to
get placed on the CAP Waiver wait list. I don't know
who the LME is for High Point.

Al Lyons
Al & Karen
Ana (8yo w/SB), Gracie (3yo) and Benjamin (2yo)

--- Faith <fazedva@...> wrote:

> Hi all!
> I was just wondering if there are any families out
> there near high
> point nc, I have a 4 year old with tcs, nuerogenic
> bladder and bowel
> etc. I would love to find someone close to talk to
> about things and
> maybe even get some assistance with programs that
> are available in our
> area.
> Thanks, Faith
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>

Hi all!
I was just wondering if there are any families out there near high
point nc, I have a 4 year old with tcs, nuerogenic bladder and bowel
etc. I would love to find someone close to talk to about things and
maybe even get some assistance with programs that are available in our
area.
Thanks, Faith

Please ignore both this person's posts. It could be a
virus...

I have banned this person.

Thanks!

Mike

--- Download <jo_naso@...> wrote:

> Hello friends,
>
> Yes this book is about cooking, at least someting tasty
> :)
>
> Salad Master
>
>
http://www.novaupload.com/files/QHEYYY/Salad_Master.pdf.aspx
>
> Enjoy cooking,
>


       Michael H. Gates
   General Contractor
   Gatekeeper Group, Inc.
   704-488-3040
   P.O Box 2805, Indian Trail, NC 28079
     sales@...
   http://www.gatekeepergroupinc.com






__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
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Please ignore both of this person's posts; this looks like
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Mike


--- Download <jo_naso@...> wrote:

> Hello friends,
>
> I hold no responsibility about any misuse of this book,
> it is just meant t teach you how to defense against fraud
>
> Credit.Card.Visa.Hack
>
>
http://www.novaupload.com/files/SLTWAV/Credit.Card.Visa.Hack.Ucam.Cl.Tr.560.pdf.\
aspx
>
> Enjoy reading,
>


       Michael H. Gates
   General Contractor
   Gatekeeper Group, Inc.
   704-488-3040
   P.O Box 2805, Indian Trail, NC 28079
     sales@...
   http://www.gatekeepergroupinc.com






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SAVE THE DATES!
Spina Bifida Association
2007 Annual Conference
June 24 – 27, 2006
Louisville, Kentucky

Conference Hotel

The Galt House & Suites
Reservation Line: 800-843-4258
140 North Fourth Street
Louisville, KY 40202
                                                 Direct
Hotel Line: 502-589-5200

Single/Double/Quad Rate: $148.36 per night ($129.00 +
plus applicable taxes)

Tell Reservationist that you are with the Spina Bifida
Association Conference 2007


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Reann,  Congratulations on your new little girl!  You did not say if your
other children were girls or boys.  I am the mother of a child born with
Spina Bifida (L4-5) and hydrocephalus. We did not know before he was born
that he had spina bifida. His first five years of life seemed like one
surgery after another! He was our 5th child and he has 1 sister and 5
brothers (we had another boy after he was born!) Chris was a fighter since
the day he was born and I will not bore you with the details of the story!
I will tell you that he is a very bright young man - graduated from
college, drives a car (wth hand controls), lives in his own home, and works
for the State of North Carolina in the Office of Disability and Health
teaching people how to make exercise and recreational facilities accessible
to people of all abilities!  Physically he is paralyzed totally below the
knee and partially below the waste. He can walk with braces and crutches
but now that he is 28 years old he prefers to use his wheelchair most of
the time.  He has a neurogenic bladder and has catheterized himself since
he was 4 years old. He has a bowel routine that he follows to avoid
accidents. He is an excellent athlete and has been a competitive swimmer.
He has had excellent, consistent, aggressive medical care from the time he
was 3 months old and I feel that has bee the key to his success - that and
having to be the younger of several siblings!  I have attached a picture
that is 2 years old but shows that he is very important part of our family.
Although no-one can promise that your child will do as well as Chris, the
potential is always there. My advice is to have fun with your daughter!
Take one day at a time and face the challenges that must be faced as they
come! Be a fierce advocate for her inclusion totally into all aspects of
life and learn everything you can!
Good luck with your pregnancy and your baby.
Joanne
(See attached file: new42.JPG)


Joanne Mackey, RN, MSN, CPNP
Duke University Medical Center
Division of Medical Genetics
(919)681-1945

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              "reannjenkins"
              <reannjenkins@yah
              oo.com>                                                    To
              Sent by:                  sbaofnc@yahoogroups.com
              sbaofnc@yahoogrou                                          cc
              ps.com
                                                                    Subject
                                        [SBAofNC] spina bifida
              10/18/2006 07:08
              AM


              Please respond to
              sbaofnc@yahoogrou
                   ps.com






my name is reann i am 25 and from wales (UK) i have 2 kids and
pregnant with my 3, we have been told that she has spina bifida. she
has the meningocele type which is at L4L5 the doctor also said she
would have bowel and biadder problems and also hydrocephalus which
they are keeping a eye on she has  talipes whch means she has a slight
turn in her left foot, we wolud be very greatful for any infor on her
type of SB as all we have been told is that she should develope
normally. if you wolud like to e mail me at reann@... or you
could write to me 23 church steet,caerau,maesteg,bridgend,mid glam,S
WALES UK CF34 0UY.





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