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.

Well we heard about the shriners, I tried calling the local shriners
club but no one ever picks up their phone.  But they only do
orthopedic diagnosis help, they helped my friends daughter with her
knee surgery. My son is cognitivly at his age, so I don't know if
any mentally handicapped agencies can help out.  I really think We
should get CAP C this time around.  I've never heard of TRiad
families, I'm down on the coast, alot of the resources avialable are
inland.

--- In sbaofnc@yahoogroups.com, "Susan Collins" <susancollins@...>
wrote:
>
> I have found that it is nearly impossible to find the programs in
NC.  If
> you qualify for SSI (which is income based) then your child
automatically
> gets Medicaid.  The waiver program isn't income based as long as
the child
> doesn't have a trust fund or something in his/her name.  There are
two
> waivers in NC, one called CAP-C and the other CAP MR/DD.  CAP-C is
for kids
> that are more medically involved than mentally, from my
understanding.  Have
> you called the ARC in your county?  ARC stands for Association for
retarded
> Citizens.  they may be able to point you in the right direction.
Even if
> you are turned down, keep applying or appeal because if you are
accepted,
> you will get back coverage to the original date of application.  I
used to
> have the sites saved to go to in NC, but I lost them all when my
hard drive
> failed.  Try these...
>
http://www.workworld.org/wwwebhelp/ssi_state_supplement_north_carolin
a.htm
> http://zeus.dhhs.state.nc.us/olm/manuals/dhs/pol-
40/man/medicaid_waiver_reqs
> _apps1.htm
> http://www.cms.hhs.gov/home/medicaid.asp
>
> Also, you may want to contact Shriner's Hospital.  The closest to
me is in
> Greenville, SC.  A lot of times they can provide transportation to
and from
> appointments if that is a problem for you.
>
> If you still can't find help, let me know and I can get in touch
with a lady
> in Wisconsin that has links to all the waiver programs.  Oh, have
you tried
> calling Triad First in Families?
>
> Susan
>
>   _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> Kellie Moors
> Sent: Saturday, August 26, 2006 3:04 PM
> To: sbaofnc@yahoogroups.com
> Subject: RE: [SBAofNC] Declined!!
>
>
>
> They told me if we don't qualify SSI and because that we didn't
qualify for
> that we didn't get medicaid,when I asked another way they said a
waiver
> program,but I've been turned down twice, and yes I think the first
time it
> was because he was so young, but this second time between the
program
> protocol and paper and the social worker not returning calls we
got turned
> down agian for MR/DD. Cognitive is the only area he isn't delayed
in, maybe
> fine motor too. It's not like I want money or food stamps, but we
may be
> losing my husbands military insurance soon, which hardly pays
visits, but
> it's better then nothing. And I was told by the employment
comission that I
> could have made trouble for my employer, but I was still seven
months
> pregnant at the time and had other things on my mind at the time,
and after
> my focus is on my family. I still run into these people and it
wouldn't be
> worth it, I would rather get the help we really need, but cannot
get.
>
> Susan Collins <susancollins@ <mailto:susancollins%40bellsouth.net>
> bellsouth.net> wrote: CAP C isn't income dependant. My daughter
has CAP C.
> You have to qualify
> on 3 of the 5 delays that are possible. This is where you have to
really
> think about where your child is developmentally. I think the areas
where
> delays need to be include behavioral, gross motor, fine motor,
self help and
> ...maybe emotionally (or is that the same as behavioral??) or
could it be
> speech? If it is speech, he should qualify under gross motor,
speech and my
> guess fine motor since a lot of kids with SB struggle with fine
motor
> issues. Self help will be hard to get at his age as many 2 year
olds are
> totally dependent on their parents. Don't you have grounds to sue
your
> employer for firing you due to a family medical leave? Even if you
get on
> CAP MR/DD in many counties there are waiting lists that are years
long.
> Also look into Children's special health services, or is it Special
> Children's Health Services? What area of NC are you in?
> Susan
>
> _____
>
> From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> [mailto:sbaofnc@yahoogroups <mailto:sbaofnc%
40yahoogroups.com> .com] On
> Behalf Of
> kellie_moors
> Sent: Friday, August 25, 2006 7:27 PM
> To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
> Subject: [SBAofNC] Declined!!
>
> I found out that my two year old had spina bifida when I was
twenty
> three weeks pregnant. And because I'm a nurse and proactive I had
my
> husband shipped off a mountian in Afghanistan and we traveled 1000
> miles for the MOMs study. Well we were declined because the MRI
said
> he didn't have any nerve in his meningocele so he wouldn't benefit
> from the surgery. Then my employer, declined to have me restart
work
> because I had been gone 5 weeks. My husband got out of the
military
> on disablity and we have since been declined by SSI two times, I
> cannot get the SBA to call back, Medicaid was approved until he
turned
> one year. And because my husband doesn't work we have been
struggling
> with all the therapy appointments and my husband's own diagnosis.
And
> my other son is suffering 'what about me's. CAP MR/DD just turned
us
> down after we applied in may and their slots closed in june. But
the
> mental health case worker dropped the ball and never called. I
called
> a lawyer, but they aren't accepting new clients. I have taken all
> tuesdays off of work for PT and speech but really cannot afford
it.
> WHAT NEXT? What do you apply for when you've been turned down by
> everything? I'm going to try for CAPs C but I've been told we make
to
> much, I don't see how when I just making bills.
>
> [Non-text portions of this message have been removed]
>
>
> ---------------------------------
> All-new Yahoo! Mail - Fire up a more powerful email and get things
done
> faster.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

I have found that it is nearly impossible to find the programs in NC.  If
you qualify for SSI (which is income based) then your child automatically
gets Medicaid.  The waiver program isn't income based as long as the child
doesn't have a trust fund or something in his/her name.  There are two
waivers in NC, one called CAP-C and the other CAP MR/DD.  CAP-C is for kids
that are more medically involved than mentally, from my understanding.  Have
you called the ARC in your county?  ARC stands for Association for retarded
Citizens.  they may be able to point you in the right direction.  Even if
you are turned down, keep applying or appeal because if you are accepted,
you will get back coverage to the original date of application.  I used to
have the sites saved to go to in NC, but I lost them all when my hard drive
failed.  Try these...
http://www.workworld.org/wwwebhelp/ssi_state_supplement_north_carolina.htm
http://zeus.dhhs.state.nc.us/olm/manuals/dhs/pol-40/man/medicaid_waiver_reqs
_apps1.htm
http://www.cms.hhs.gov/home/medicaid.asp

Also, you may want to contact Shriner's Hospital.  The closest to me is in
Greenville, SC.  A lot of times they can provide transportation to and from
appointments if that is a problem for you.

If you still can't find help, let me know and I can get in touch with a lady
in Wisconsin that has links to all the waiver programs.  Oh, have you tried
calling Triad First in Families?

Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Kellie Moors
Sent: Saturday, August 26, 2006 3:04 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] Declined!!



They told me if we don't qualify SSI and because that we didn't qualify for
that we didn't get medicaid,when I asked another way they said a waiver
program,but I've been turned down twice, and yes I think the first time it
was because he was so young, but this second time between the program
protocol and paper and the social worker not returning calls we got turned
down agian for MR/DD. Cognitive is the only area he isn't delayed in, maybe
fine motor too. It's not like I want money or food stamps, but we may be
losing my husbands military insurance soon, which hardly pays visits, but
it's better then nothing. And I was told by the employment comission that I
could have made trouble for my employer, but I was still seven months
pregnant at the time and had other things on my mind at the time, and after
my focus is on my family. I still run into these people and it wouldn't be
worth it, I would rather get the help we really need, but cannot get.

Susan Collins <susancollins@ <mailto:susancollins%40bellsouth.net>
bellsouth.net> wrote: CAP C isn't income dependant. My daughter has CAP C.
You have to qualify
on 3 of the 5 delays that are possible. This is where you have to really
think about where your child is developmentally. I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech? If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues. Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents. Don't you have grounds to sue your
employer for firing you due to a family medical leave? Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services? What area of NC are you in?
Susan

_____

From: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
[mailto:sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com] On
Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups <mailto:sbaofnc%40yahoogroups.com> .com
Subject: [SBAofNC] Declined!!

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

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


---------------------------------
All-new Yahoo! Mail - Fire up a more powerful email and get things done
faster.

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






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

--- In sbaofnc@yahoogroups.com, Kellie Moors <kellie_moors@...>
wrote:
>
> They told me if we don't qualify SSI and because that we didn't
qualify for that we didn't get medicaid,when I asked another way
they said a waiver program,but I've been turned down twice, and yes
I think the first time it was because he was so young, but this
second time between the program protocol and paper and the social
worker not returning calls we got turned down agian for MR/DD.
Cognitive is the only area he isn't delayed in, maybe fine motor
too.  It's not like I want money or food stamps, but we may be
losing my husbands military insurance soon, which hardly pays
visits, but it's better then nothing.  And I was told by the
employment comission that I could have made trouble for my employer,
but I was still seven months pregnant at the time and had other
things on my mind at the time, and after my focus is on my family.
I still run into these people and it wouldn't be worth it, I would
rather get the help we really need, but cannot get.
>
> Susan Collins <susancollins@...> wrote:          CAP C isn't
income dependant. My daughter has CAP C. You have to qualify
> on 3 of the 5 delays that are possible. This is where you have to
really
> think about where your child is developmentally. I think the areas
where
> delays need to be include behavioral, gross motor, fine motor,
self help and
> ...maybe emotionally (or is that the same as behavioral??) or
could it be
> speech? If it is speech, he should qualify under gross motor,
speech and my
> guess fine motor since a lot of kids with SB struggle with fine
motor
> issues. Self help will be hard to get at his age as many 2 year
olds are
> totally dependent on their parents. Don't you have grounds to sue
your
> employer for firing you due to a family medical leave? Even if you
get on
> CAP MR/DD in many counties there are waiting lists that are years
long.
> Also look into Children's special health services, or is it Special
> Children's Health Services? What area of NC are you in?
> Susan
>
> _____
>
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> kellie_moors
> Sent: Friday, August 25, 2006 7:27 PM
> To: sbaofnc@yahoogroups.com
> Subject: [SBAofNC] Declined!!
>
> I found out that my two year old had spina bifida when I was
twenty
> three weeks pregnant. And because I'm a nurse and proactive I had
my
> husband shipped off a mountian in Afghanistan and we traveled 1000
> miles for the MOMs study. Well we were declined because the MRI
said
> he didn't have any nerve in his meningocele so he wouldn't benefit
> from the surgery. Then my employer, declined to have me restart
work
> because I had been gone 5 weeks. My husband got out of the
military
> on disablity and we have since been declined by SSI two times, I
> cannot get the SBA to call back, Medicaid was approved until he
turned
> one year. And because my husband doesn't work we have been
struggling
> with all the therapy appointments and my husband's own diagnosis.
And
> my other son is suffering 'what about me's. CAP MR/DD just turned
us
> down after we applied in may and their slots closed in june. But
the
> mental health case worker dropped the ball and never called. I
called
> a lawyer, but they aren't accepting new clients. I have taken all
> tuesdays off of work for PT and speech but really cannot afford
it.
> WHAT NEXT? What do you apply for when you've been turned down by
> everything? I'm going to try for CAPs C but I've been told we make
to
> much, I don't see how when I just making bills.
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
> ---------------------------------
>  All-new Yahoo! Mail - Fire up a more powerful email and get
things done faster.
>
> [Non-text portions of this message have been removed]
>

They told me if we don't qualify SSI and because that we didn't qualify for that
we didn't get medicaid,when I asked another way they said a waiver program,but
I've been turned down twice, and yes I think the first time it was because he
was so young, but this second time between the program protocol and paper and
the social worker not returning calls we got turned down agian for MR/DD. 
Cognitive is the only area he isn't delayed in, maybe fine motor too.  It's not
like I want money or food stamps, but we may be losing my husbands military
insurance soon, which hardly pays visits, but it's better then nothing.  And I
was told by the employment comission that I could have made trouble for my
employer, but I was still seven months pregnant at the time and had other things
on my mind at the time, and after my focus is on my family.  I still run into
these people and it wouldn't be worth it, I would rather get the help we really
need, but cannot get.

Susan Collins <susancollins@...> wrote:          CAP C isn't income
dependant. My daughter has CAP C. You have to qualify
on 3 of the 5 delays that are possible. This is where you have to really
think about where your child is developmentally. I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech? If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues. Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents. Don't you have grounds to sue your
employer for firing you due to a family medical leave? Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services? What area of NC are you in?
Susan

_____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Declined!!

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

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






---------------------------------
  All-new Yahoo! Mail - Fire up a more powerful email and get things done faster.

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

CAP C isn't income dependant.  My daughter has CAP C.  You have to qualify
on 3 of the 5 delays that are possible.  This is where you have to really
think about where your child is developmentally.  I think the areas where
delays need to be include behavioral, gross motor, fine motor, self help and
...maybe emotionally (or is that the same as behavioral??) or could it be
speech?  If it is speech, he should qualify under gross motor, speech and my
guess fine motor since a lot of kids with SB struggle with fine motor
issues.  Self help will be hard to get at his age as many 2 year olds are
totally dependent on their parents.  Don't you have grounds to sue your
employer for firing you due to a family medical leave?  Even if you get on
CAP MR/DD in many counties there are waiting lists that are years long.
Also look into Children's special health services, or is it Special
Children's Health Services?  What area of NC are you in?
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
kellie_moors
Sent: Friday, August 25, 2006 7:27 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Declined!!



I found out that my two year old had spina bifida when I was twenty
three weeks pregnant. And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study. Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery. Then my employer, declined to have me restart work
because I had been gone 5 weeks. My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's. CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called. I called
a lawyer, but they aren't accepting new clients. I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT? What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.






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

I found out that my two year old had spina bifida when I was twenty
three weeks pregnant.  And because I'm a nurse and proactive I had my
husband shipped off a mountian in Afghanistan and we traveled 1000
miles for the MOMs study.  Well we were declined because the MRI said
he didn't have any nerve in his meningocele so he wouldn't benefit
from the surgery.  Then my employer, declined  to have me restart work
because I had been gone 5 weeks.  My husband got out of the military
on disablity and we have since been declined by SSI two times, I
cannot get the SBA to call back, Medicaid was approved until he turned
one year. And because my husband doesn't work we have been struggling
with all the therapy appointments and my husband's own diagnosis. And
my other son is suffering 'what about me's.  CAP MR/DD just turned us
down after we applied in may and their slots closed in june. But the
mental health case worker dropped the ball and never called.  I called
a lawyer, but they aren't accepting new clients.  I have taken all
tuesdays off of work for PT and speech but really cannot afford it.
WHAT NEXT?  What do you apply for when you've been turned down by
everything? I'm going to try for CAPs C but I've been told we make to
much, I don't see how when I just making bills.

Rita,  There have been many women who were born with spina bifida and who
have had successful pregnancies.  I would say that your first step would be
to find a neurosurgeon experienced in spina bifida (there are a few in NC)
and have a good review of your condition at this time.  That person can
then refer you to a OB who could work with you on your fertility issues.
Spina bifida does not include infertility as part of the condition, but may
require special attention during a pregnancy - kidneys, bladder, spine,
modified ambulation - Studies have been published and usually there are
presentation during the annual conference on the subject.  SBAA may have a
position paper at this time, I am not sure. But they do have a great
Medical Advisory Board who are resources.
Duke has a Myelodysplasia clinic coordinator who could talk to you about
resources - Crista Walters 919 681-5456
Joanne


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

"The information contained in this electronic mail transmission contains
confidential information belonging to the sender that is legally
privileged.  This information is intended only for the use of the
individual or entity named above.  The authorized recipient of this
information is prohibited from disseminating, distributing, or copying this
information.  If you have received this information in error please delete
this message, any attachments, and all copies and backups from your
computer and notify the sender immediately by replying to this message or
call 919.668-1100 or 1.800.MED-DUKE."



                       "Rita Connelly
                       (Ed - husband)"          To:       sbaofnc@yahoogroups.com
                       <lacyrose@carolin        cc:
                       a.rr.com>                Subject:  [SBAofNC] Spina Bifida
and Pregnancy
                       Sent by:
                       sbaofnc@yahoogrou
                       ps.com


                       08/20/2006 04:36
                       PM
                       Please respond to
                       sbaofnc






Hello all.  I am new to the group.  I have been researching for years
people with SB getting and being pregnant.

I went through infertility treatments with my husband about 6 years
ago.  I had been doing inseminations when I started to get extreme
pain near my left ovary.  My doctor thought laparoscopy was the next
step.  Well, he did not do appropriate research into my disability
and aborted the laporoscopy in the middle of the procedure.  I have a
very mild form of SB (paralyzed from the ankles to my toes), but
although appearing normal on the outside, my spine curves a bit
forward torward the end of my spine.

I have had infertility and pain ever since and have not heard of
anyone wanting to operate since.  That is, until I moved to
Charlotte.  I went to urgent care the other day with severe pain on
the left side and the doctor thought my doctor was crazy and that
they would just have to move me to an appropriate position to do the
surgery.  He said he thinks I was never worked up enough.

This distresses me.  Almost 12 years after having wanted to become
pregnant, I am finding this out now.  We have successfully adopted a
little girl from China and we love her so very much.  Adoption is my
life now, but I have never been able to close that book of my life
because I think I had a crappy doctor.

The only research I can find on the internet when I search Spina
Bifida and pregnancy is if you are pregnant and have a child with
Spina Bifida.  This is driving me nuts.

I am looking for doctors with experience in SB and pregnancy as well
as perhaps others who have become pregnant.

I would greatly appreciate any information I can get.

Rita







Yahoo! Groups Links

Hello all.  I am new to the group.  I have been researching for years
people with SB getting and being pregnant.

I went through infertility treatments with my husband about 6 years
ago.  I had been doing inseminations when I started to get extreme
pain near my left ovary.  My doctor thought laparoscopy was the next
step.  Well, he did not do appropriate research into my disability
and aborted the laporoscopy in the middle of the procedure.  I have a
very mild form of SB (paralyzed from the ankles to my toes), but
although appearing normal on the outside, my spine curves a bit
forward torward the end of my spine.

I have had infertility and pain ever since and have not heard of
anyone wanting to operate since.  That is, until I moved to
Charlotte.  I went to urgent care the other day with severe pain on
the left side and the doctor thought my doctor was crazy and that
they would just have to move me to an appropriate position to do the
surgery.  He said he thinks I was never worked up enough.

This distresses me.  Almost 12 years after having wanted to become
pregnant, I am finding this out now.  We have successfully adopted a
little girl from China and we love her so very much.  Adoption is my
life now, but I have never been able to close that book of my life
because I think I had a crappy doctor.

The only research I can find on the internet when I search Spina
Bifida and pregnancy is if you are pregnant and have a child with
Spina Bifida.  This is driving me nuts.

I am looking for doctors with experience in SB and pregnancy as well
as perhaps others who have become pregnant.

I would greatly appreciate any information I can get.

Rita

--- In sbaofnc@yahoogroups.com, "Mari Pedersen" <mpedersen@...>
wrote:
>
> Hi,
>
> My son has SB, he is 7.5. He is starting to realize his
limitations too and
> becoming more aware of how he can't play regular sports.
>
> Mari
>
> -----Original Message-----
> From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On
Behalf Of
> alfredlyons
> Sent: Friday, August 18, 2006 11:19 PM
> To: sbaofnc@yahoogroups.com
> Subject: [SBAofNC] New To Asheville
>
> Hi Friends!
>
  our
> 7yo "Ana" is really starting to notice differences>
> Thanks!
>
> Al & Karen Lyons
> alfredlyons@...
> 828.335.9900
>
Hi Al & Karen, Mari,

I'm one of those guys that grew to adulthood with SB. I'll be 43 in
December.

I remember when I first noticed I was different. I was about the
same age as your children. I knew I walked with braces, but it never
really got in my head that something might be wrong or different.
Then one day I was walking into school and I saw my reflection in
the glass of the door. Don't know why I'd never noticed it before.
But, anyway, I was stunned. No wonder kids thought I was strange and
made fun of me.

Fortunately, at that early age my folks were very supportive of me
and any efforts I made to overcome my disability. When I learned to
speak I told my folks I'd learn to walk. They said I could do if I
wanted to. I did. The doctors still don't understand it today. My
orthopedist says I break every rule concerning walking that he knows.

My parents support changed as I got older and caused a lot of
confusion for me.

I think one of the best things a parent can do is strive to improve
their child's self image and be consistent.

I've learned that if I feel good about me, others will follow along.
I learned this the hard way. My folks never instilled in me a good
self image. I spent a lot of years--especially in my teens--trying
to not be handicapped. Silly, but I did. I thought if I could just
not be handicapped I'd feel better.

Finally, I realized it is what it is and I made the best of it. I
did things no one thought possible.

I learned to drive using hand controls at the age of 19. I studied
martial arts for three years from the age of 22 to 25.

I began working out in a gym--in 4 months time I increased my bench
press from 95 lbs to 205 lbs.

After various jobs in different fields, at the age of 28, I went to
work for a Fortune 500 company making more money than anyone in my
immediate family had ever made. Did that for ten years, until I
finally had to go on disability due to some problems related to SB.

I've spent the last 4 or 5 years recovering from some health issues
and may soon be back in the workforce. I have a job offer from a
friend who is unconcerned with the fact that my disability may cause
me to miss work at times.

I'm currently perusing a career as a novelist. Something I can do
from home and not have to worry about my health so much.

Children and adults may have limitations, but they aren't
limitations themselves. Something I had to learn on my own because
no one ever bothered to tell me.

If we teach our kids this, I think they'll be alright and overcome
SB. Will they struggle and have difficult times? Absolutely. I still
do. I'm not going to be able to go to church this morning because
I'm not feeling so great. Guess I didn't get my meds in me early
enough. I'll feel better later this afternoon and attend this
evening's service. The struggles and difficulties are not the end of
the world, not even a good start to the end of the world.

I'm gonna shut up now. I set out to write a simple note of
encouragement and I've about written a novel.

Can't help it. I'm a writer.

Hopefully, I've been an encouragement.

Todd Greene
http://www.toddmichaelgreene.com
http://anewnovelistsjourney.blogspot.com
http://messagesfromtheasylum.blogspot.com

Hi,

My son has SB, he is 7.5. He is starting to realize his limitations too and
becoming more aware of how he can't play regular sports. We live south of
Charlotte in Indian Trail.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
alfredlyons
Sent: Friday, August 18, 2006 11:19 PM
To: sbaofnc@yahoogroups.com
Subject: {Spam} [SBAofNC] New To Asheville

Hi Friends!

We are new to Asheville, with our 7yo with Spina Bifida. Interested in
meeting local families, especially children of similar age, as our
7yo "Ana" is really starting to notice differences and would like to
meet others in her peer group affected by SB.

Thanks!

Al & Karen Lyons
alfredlyons@...
828.335.9900






Yahoo! Groups Links

Hi Friends!

We are new to Asheville, with our 7yo with Spina Bifida. Interested in
meeting local families, especially children of similar age, as our
7yo "Ana" is really starting to notice differences and would like to
meet others in her peer group affected by SB.

Thanks!

Al & Karen Lyons
alfredlyons@...
828.335.9900

Research Articles Online - Online Resource Now
Updated!

SBA National Office has just updated the results of a
quarterly scientific publication search on Spina
Bifida and related topics on the web in Research
Articles Online.  This new Resource Center section
features highlights of research articles on topics
that are most frequently requested by National
Resource Center patrons.


http://www.sbaa.org/site/PageServer?pagename=research_articles_main


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It's Not Too Late - Visit www.sbaa.org

To Register for SBA's Annual Conference & SAVE

  June 25-28, 2006 in Atlanta, Georgia

Register Now! Reduced Early Bird Rates END JUNE 15!

This is what's happening at SBA's Annual Conference:

SUNDAY, JUNE 25
6:30 pm - 8:00 pm - Opening Night Reception sponsored
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- A Day at the Circus - Fun for kids from 8 to 80!
Visit with the conference exhibitors and meet old and
new friends.



MONDAY, JUNE 26
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 12:00 pm - Conference Plenary Session -
Challenging Issues in Spina Bifida Care in Adolescents
and Adults
-- Leaders in the disciplines of urology, psychology,
pediatrics, and childhood development address the
issues that concern adults living with Spina Bifida
and parents of children and adolescents alike.

12:30 pm - 2:00 pm - Exhibit Hall Luncheon - Sponsored
by Mentor Corporation & SBA

2:15 pm - 5:00 pm - Conference Sessions



TUESDAY, JUNE 27
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 4:45 pm - Conference Sessions

7:00 pm - 10:00 pm - Teen Dance - Teens look forward
to this night of music and fun all year!

8:00 pm - 11:00 pm - Adult Casino Night - An evening
of fun, food, and games for adults with Spina Bifida
and their and their partners or professional aides.



WEDNESDAY, JUNE 28
8:45 am - 5:00 pm - Kids!Camp

9:00 am - 11:45 pm - Conference Sessions

12:00 pm - 2:30 pm - Celebration Luncheon with Keynote
Speaker World-Class Athlete & Spina Bifida Advocate
Jean Driscoll

2:45 pm - 4:15 pm - Conference Sessions

7:15 pm - 9:00 pm - Town Hall Meeting (Open to all
Stakeholders of SBA) - Our Spina Bifida Association
community will gather together to get answers to
questions, share ideas, celebrate what's working, and
explore ways to make things work even better.

Register Online Now!

Pre-Conference Events

SATURDAY, JUNE 24
12:00 pm - 5:30 pm - Group Member Days - Positioning
Your Organization to Succeed in Challenging Times

SUNDAY, JUNE 25
8:00 am - 5:00 pm - Group Member Days - Positioning
Your Organization to Succeed in Challenging Times

8:30 am - 5:00 pm - NHPC Education Day: Applying
Outcomes-Oriented Research - Sponsored by UroMed

10:00 am - 5:00 pm - Adult Day: Living Well with Spina
Bifida - Sponsored by Astra Tech



Register Online NOW! Visit www.sbaa.org



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Register at www.sbaa.org and SAVE $60

We're Extending the Low "Early Bird" Registration
Rates for SBA's Annual Conference through JUNE 15!

You can stretch your travel budget a little further!

Reduced rates are just one good reason to go to SBA's
Annual Conference in Atlanta on June 25-28!

Register for SBA's Annual Conference.

Need some more good reasons? There are plenty!

Unparalleled educational sessions. Whether you're a
parent or an adult living with Spina Bifida, you'll
learn the latest medical advances and practical
recommendations to improve your quality of life.

Kids!Camp where kids with Spina Bifida can just be
kids. This year there will be basketball, "mad
science," rock climbing, arts and crafts AND a trip to
the fabulous Georgia Aquarium.

A day-long program just for adults with Spina Bifida.
All day Sunday, June 25 will be dedicated to the
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don't miss Adult Casino Night on Tuesday, June 27!

Atlanta is a fun-filled city with lots to do for young
and old. The CNN Center, the Atlanta Braves, the World
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Learn more about SBA’s 33nd Annual Conference.

This offer is only good until June 15!

Register at www.sbaa.org

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NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY

The National Survey of the Spina Bifida Community is a
biannual project of the Spina Bifida Association
(SBA).  SBA analyzes the findings to help make the
case for educational campaigns and ongoing
programmatic efforts.

This online survey only takes a few minutes.  To take
the survey go to http://66.34.105.118/  or visit
www.sbaa.org “What’s New?” section.


>>Please forward this request to anyone in the Spina
Bifida Community and help your voices be heard!


>>To involve the Hispanic Community, we have included
the Spanish version of the request.  Please forward.
Thank you!!


ENCUESTA DE ESPINA BÍFIDA - PARA ADULTOS Y FAMILIAS
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida, la cual nos ayudará a
desarrollar una variedad de programas para usted. Sus
respuestas serán confidenciales. Oprima aquí:
http://66.34.105.118/ ¡Gracias!


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<><><><><><><><><><><><><><><><><><><><><><>
NATIONAL SURVEY OF THE SPINA BIFIDA COMMUNITY/
ENCUESTA DE ESPINA BÍFIDA - PARA ADULTOS Y FAMILIAS
>>Take a few minutes to complete the survey online.
>>Visit: http://66.34.105.118/
<><><><><><><><><><><><><><><><><><><><><><>

The National Survey of the Spina Bifida Community, a
biannual project of the Spina Bifida Association
(SBA).  SBA analyzes the findings to help make the
case for educational campaigns and ongoing
programmatic efforts.  Please pass this announcement
along and let your voices be heard!

Thanks for your time!


Encuesta de Espina Bífida - para adultos y familias
Esta es una encuesta a nivel nacional para adultos y
familias que viven con la condición de espina bífida,
y para los proveedores de cuidado y servicios médicos
que forman parte de sus vidas. Por favor tome unos
breves minutos para completar esta encuesta para la
Asociación de Espina Bífida, la cual nos ayudará a
desarrollar una variedad de programas para usted. Sus
respuestas serán confidenciales. ¡Gracias!

Thanks! ¡Gracias!

Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Web:  www.sbaa.org


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Hi!

We are new to the group. We are considering a move to Asheville, NC in
the future and were wondering about resources for our 7yo daughter, who
has SB (L4-S3/VP Shunt/HKAFO's).

Thanks!

Al Lyons

Our pediatrician recomends against solids for for the first 6 months
for all kids to reduce the likelihood of developing food alergies. (2
years for foods like peanuts and strawberries) The extra bonus was
that the milk stools pass much more easily reducing the problems at
the beginning. Once we started solids the Dr at SB clinic recommended
adding sorbitol containing juices like prune and apple. He also
suggested benefiber. There is also a prescription softener that we
used for a while.

If you are getting bad diaper rash bleeding from the constant stools,
I can suggest using a blow dryer to dry the bottom between changes and
getting a good diaper rash cream. We found a store brand that has 40%
zinc as opposed to the 20% in the well known brands. These two things
helped reduce the rashing a lot, though it didn't permanently clear
until we started a cath scedule. I don't have experience with bleeding
from a prolapse.

As for foods related to latex allergy, there are no studies showing
foods increase the riskof latex allergy. However some people w/ latex
allergy also have reactions to those foods listed.

Congratulation on your baby boy,
Adam

hi all ,I have started a site  http://www.outofstress.com
  which deals all aspects of stress and recovery.Our objective is to
  help peoplethose who are suffering from stress ,anxiety and
  depression.If any of you have stress related stories,
  comments,tips,sugggestion post webmaster@... site
  covers a junk traffic of 7000/month.You can get a good publicity as
  well.....bye..kamal &mak...webmaster

  STRESS STORIES
  http://www.outofstress.com/stress-stories/steps-to-deal-with-stress.php
http://www.outofstress.com/stress-stories/simon-wife-stress.php

Hi,
   I have a son that also has spina bifida, and a VP Shunt. He will be 5 in May
of this year. He did have problems with his bowels also. His doctor prescribed
him a medication that keeps his stools soft. It's called Glycolax. It's a powder
that I put in his drink every morning.  It has no taste so he doesn't even know
that it is in his drink.
   I hope this information may help.
   Amy of Gastonia
Stormie <counselorwillingham@...> wrote:
   Hi,
I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.





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  Use Photomail to share photos without annoying attachments.

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

Hi!  Have you contacted the support group in your area?
I am Susan and I have a 10 yr old daughter with SB.  We live in the
Winston-Salem area.
The prolapsed rectum isn't uncommon with SB.  Keeping the bowel movements as
soft as possible can help keep the rectum from "falling out".  It may get
better with time.  A few kids do require surgery for this.  The foods "high"
on the latex precautions list include avocado, bananas, chestnuts, kiwi and
papaya.  Many doctors don't suggest limiting foods until an actual
sensitivity has been established.  However, others do.  It really is up to
you as a parent to decide what you want to do.  For babies, the only common
food would be bananas.  There are three levels of foods that are considered
similar in proteins to latex.  The high risk foods are mentioned above (not
sure if I missed any).  Level 2 (not as likely to cause cross-reactions)
include common foods such as tomatoes (which would include tomato
sauces--hard to avoid in baby "2nd" foods.
I am sorry you have had to deal with so many surgeries so early in his life.
I know how stressful that can be, especially dealing with postpartum
hormones as well!  It is great that you are looking for info on the web.
Let me know if I can help and if you are interested in more online support
groups for parents.
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Stormie
Sent: Sunday, March 19, 2006 4:55 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] I have a 7 week old son with sb


Hi,
I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.





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

Hi,
  I have a beautiful son with spina bifida, he has a VP that has
already malfunctioned.  He has had to endure 5 surgeries in his
short life.  But despite all he flourishes and is a healthy, loving
good natured baby.  He no longer requires catheterization, and has
no symptoms of the Chiari malformation thus far.  I have a question
though that maybe one of you has an answer for.  Well actually 2
questions.  First, my sons rectum constantly protrudes and bleeds.
The doctor said it's because his muscle is lax and that it should
get better with time. They gave me some ointment to apply to numb it
but it looks so painful and he constantly stools and crys when he
does.  Have any of you dealt with this and can offer any advise to
make bowel movements more comfortable for him?  Also, what foods
must I keep away from him becuse of his potential to develop Latex
allergies?  I fed him bananas yesterday, he loved them, but I read
today he could eventually be allergic to them.  I have three older
children ( 2 girls 12 and 11 and another son 7), but it has been so
long it is almost like starting over and with his condition it is
even more new for me.  I would welcome any advise.  I treat him like
any other baby. He has no ability to move his legs from the thigh
down but outside that..he is just my sweet baby boy whom we all
adore.

Thanks to the generosity of Coloplast, a long term
sponsor of SBA, we are pleased to announce the
opportunity for you (and all in the Spina Bifida
Community) to enter to win a trip for 2 the 2006 Spina
Bifida Annual Conference to be held in Atlanta, GA
June 26-28, 2006.

To enter just go to:
http://www.sbaa.org/site/DocServer/coloplast_flyer.pdf

Please feel free to send this link on. GOOD LUCK

Regards,
Adriane

Adriane K. Griffen, MPH, CHES
Director, Public Health Programs
Spina Bifida Association
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
Phone:  (202) 944-3285, x 13  *  Fax: (202) 944-3295
Email: agriffen@...

_______________________________________
Make Plans to Attend SBA's Annual Conference
June 25 - 28, 2006 in Atlanta
Check sbaa.org for more information



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Hi
I have a 6 yr old girl with SB. We live in Chapel Hill.
Was wondering if anyone has any ideas/info on summer camps. We know
about Camp Carefree and Victory Junction - Sara's not old enough for
that one yet.
Thanks.
Nice to "meet" you all.
Laura

Cathie,

   Yes, my daughter's pediatrician prescribed the patch.

   My one thought regarding the endometrial ablation is to question if that is in
effect a form of sterilization.  With my daughter, this was not suggested. 
However, I would have serious concerns about her ability to carry a pregnancy to
term without risk of serious injury or complication due to the pregnancy.  By
the way, I am a nurse.  (This is of course a seperate concern from all of the
'Dad' worries that float around in my brain when discussing my 13 year old). 
She has a fairly high level neuro deficit--starting at her belly button down she
has no sensation or muscle control.

   For other young ladies where the option of a future pregnancy is reasonable, I
would think that a decision about an endometrial ablation probably should be
deferred.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. Did your family doctor prescribe this? Our Dr.
recommends endometrial ablation for our daughter to make it more reliable and
permanent. What do you think? - Cathie


----- Original Message -----
From: Donald Butler
To: sbaofnc@yahoogroups.com
Sent: 2/7/2006 2:49:39 PM
Subject: RE: [SBAofNC] Re: managing menstruation


Hello,

   My 13 yr old daughter recently started her menses.  We had discussed with
pediatrician previously.  There was no question that she would be able to manage
independently, so we've started using the birth control patch.  To stop
menstruation, we will skip the "rest" patch (that allows menstruation) and
continuously use the low dose hormone patch.  Having just started, can not
provide feedback on how effective it is.

   Certainly, depo is one option depending on how well it works.  It is something
where there can be break through spotting and not on any sort of predictable
interval.  Most women eventually stop spotting.

   We are in Eastern NC.

   Don

cathie hill <teachyounguns@...> wrote:
   Thank you for your response. I have gotten two different opinions from doctors
on what to do. Your response was very helpful.By the way, we live near Charlotte
too in Mooresville!! - Cathie and Marti


----- Original Message -----
From: prplbutterfly
To: sbaofnc@yahoogroups.com
Sent: 1/22/2006 8:53:20 PM
Subject: [SBAofNC] Re: managing menstruation


Dear Cathie,

I am a 32 year old female with SB and I stopped menstruation with a
Depo Provera shot the doctor administers every 13 weeks in his office.
My biggest problem with menstruation was not only the sanitary issues,
but the pain and being able to go about my day independently without
cramps keeping me down. So, we elected to go the Depo Provera route.
It stops the period to a little spotting in most people, but for me it
totally stopped it and I have been cramp free ever since. However, at
some point I'm going to have to go off of it because it's certainly
not normal to stop your natural period. And my mother began early
menopause in her late 30s, so the doctor things that around 35 we need
to stop it and get me back on a normal cycle to see when menopause
happens and how. I'm in NC, too, near Charlotte.

Hope this helps,

Monica Foster

--- In sbaofnc@yahoogroups.com, "cathiethird3" <teachyounguns@e...>
wrote:
>
> Our 18year old daughter with SB will be working at her first job and
> can not take care of her periods. Her doctor suggested methods to
stop
> it and we agree that she should have it stopped. She is unable to
> manage it on her own at all.  Has anyone ever done this with their
> daughters? And if so, how did you stop it? -Cathie/NC
>






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

Hi Monica,

So great to meet you (although online), because we have not had much contact
with other SB people. We are struggling with many issues surrounding SB and
wondering how to seal with them. So we would love to share more and learn
from your experience.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
prplbutterfly
Sent: Sunday, February 19, 2006 7:39 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Re: New Member, Mari Pederson


Hi, Mari and to the other adult in Charlotte area with spina bifida.
I'm also an adult in Charlotte with spina bifida. I'm a 32 year old
female, married, living in Charlotte. My paralysis is L3 and I'm a
wheelchair user. Would love to correspond and share experience.

Take care,

Monica


--- In sbaofnc@yahoogroups.com, jcfreak1984 <no_reply@...> wrote:
>
> Hello,
>
> My son, 7 y.o., has spina bifida. We just moved to NC from CA. I
am
> really interested in finding a support group for myself and my son
for
> the struggles we face with spina bifida. Does anyone have any
> suggestions?
>
> Mari
>
>
*********************************************************************
**
>
> Here's a link to the NC chapter of the SBAA:
>
> http://sbanc.home.mindspring.com
>
> On the left side of the page you'll see a link to local support
> groups. There are several listed by the general area you live in.
>
> Hope this helps.
>
> I'm an adult with Spina Bifida living in the Charlotte area of NC.
>







Yahoo! Groups Links

Hi, Mari and to the other adult in Charlotte area with spina bifida.
I'm also an adult in Charlotte with spina bifida. I'm a 32 year old
female, married, living in Charlotte. My paralysis is L3 and I'm a
wheelchair user. Would love to correspond and share experience.

Take care,

Monica


--- In sbaofnc@yahoogroups.com, jcfreak1984 <no_reply@...> wrote:
>
> Hello,
>
> My son, 7 y.o., has spina bifida. We just moved to NC from CA. I
am
> really interested in finding a support group for myself and my son
for
> the struggles we face with spina bifida. Does anyone have any
> suggestions?
>
> Mari
>
>
*********************************************************************
**
>
> Here's a link to the NC chapter of the SBAA:
>
> http://sbanc.home.mindspring.com
>
> On the left side of the page you'll see a link to local support
> groups. There are several listed by the general area you live in.
>
> Hope this helps.
>
> I'm an adult with Spina Bifida living in the Charlotte area of NC.
>

We are just outside Charlotte in Union county. I looked at the sight and see
there is a group for the Charlotte area. Thanks, I had seen that site a few
months ago and forgot about it. I'll try contacting them.

Mari

-----Original Message-----
From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Susan Collins
Sent: Sunday, February 19, 2006 2:08 PM
To: sbaofnc@yahoogroups.com
Subject: RE: [SBAofNC] New Member

What area are you in?  You can see support group areas at www.sbanc.org
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Saturday, February 18, 2006 11:30 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New Member


Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari






SPONSORED LINKS
Spina
<http://groups.yahoo.com/gads?t=ms&k=Spina+bifida&w1=Spina+bifida&c=1&s=18&.
sig=vmAnASXs8SNmAU1G4zb1Fw> bifida

   _____

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on the web.


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




Yahoo! Groups Links

What area are you in?  You can see support group areas at www.sbanc.org
Susan

   _____

From: sbaofnc@yahoogroups.com [mailto:sbaofnc@yahoogroups.com] On Behalf Of
Mari Pedersen
Sent: Saturday, February 18, 2006 11:30 PM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] New Member


Hello,

My son, 7 y.o., has spina bifida. We just moved to NC from CA. I am
really interested in finding a support group for myself and my son for
the struggles we face with spina bifida. Does anyone have any
suggestions?

Mari






SPONSORED LINKS
Spina
<http://groups.yahoo.com/gads?t=ms&k=Spina+bifida&w1=Spina+bifida&c=1&s=18&.
sig=vmAnASXs8SNmAU1G4zb1Fw> bifida

   _____

YAHOO! GROUPS LINKS



*  Visit your group "sbaofnc <http://groups.yahoo.com/group/sbaofnc> "
on the web.


*  To unsubscribe from this group, send an email to:
  sbaofnc-unsubscribe@yahoogroups.com
<mailto:sbaofnc-unsubscribe@yahoogroups.com?subject=Unsubscribe>


*  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service
<http://docs.yahoo.com/info/terms/> .


   _____




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