You are right, susan! my family and I were very excited to have a baby girl.
Monroe is near in Charlotte, it is just about 40-45 minutes driving. What is the
spina bifida level of your daughter? When you are pregnant with her, did the
doctor found out if she had an hydrocephalus? I'm so scared with this
hydrocephalus. My doctor told me that as of now everything is normal with the
other parts of the body except for that hole in her spine, but we don't yet what
will happen for the succeeding weeks or months, so, I'm quite worried about
this. Please tell me something about you daughter when you are still pregnant
with her. Is there a food that I can't eat or food that I need to eat to help
the baby fight some infections inside my womb? Thank you so much for giving me a
time. give my regards and hud to your daughter. Hope my daughter would be like
your daughter who overcome all the pain. Cynthia
Susan Collins <SusanCollins@...> wrote:I can try to help you get the
correct address for the contact person at
SBANC. What major city is Madison near? I was thinking Charlotte. If so,
contact Kim Gates. You can call the 800 number listed to leave a message
for Kim. If you are closer to Winston-Salem or Greensboro, contact me.
Just let me know and I will see what I can do about getting the correct
email address to you.
I bet your family is excited about a girl after all those boys! I have a
daughter with SB too. She is now 7 years old and in second grade. She
walks some, rolls some and just sits some! LOL She likes to crawl as well.
I'll write more later. We are late for a Cub Scout Blue and Gold banquet!
Susan

-------Original Message-------

From: sbaofnc@yahoogroups.com
Date: Saturday, February 08, 2003 4:30:34 PM
To: sbaofnc@yahoogroups.com
Subject: Re: [SBAofNC] Spina Bifida


Hi Susan, Thank you so much to your support and information. I'm expecting a
baby girl, actually my family are very excited because my baby will be the
first girl in the whole family, all my brothers had a son but not a daughter
I didn't contact the sbanc in my county, I'm trying to email them but my
email always come back to me, I don't know why, I already check the sbanc
website and their email address it is the same but still my email can't
reach them. I'll continue to keep in touch with you and ask some questions
about spina bifida. Again, thanks and God Bless.
Susan Collins <SusanCollins@...> wrote:Hi Cynthia and
congratulations onthe impeding birth of your baby! I am sure
you are very excited about having anew member of your family, and a little
apprehensive about caring for a baby with health needs. First, take one day
at a time and enjoy the new baby you will have. You will learn the medical
stuff as the need aises. There are many resources available to us now.
SInce you have internet access, you will have even more! Have you contacted
your local SBA NC support group? Youc an get the contact information at www
sbanc.org. "Support groups" are meeting places for parents of children with
SB, children, youth and adults with SB as well. Don't overlook that avenue
just because you don't feel you need "support". You can find great
information there, as well as a seense that you are not alone. Also, visit
your library and see about a book called "Children with Spina Bifida". The
SBANC bought copies of this book and has tried to place at least one book in
each county of NC. Your local library may need to order it in their branch
for you, but it is a great book. If you have the resources, I recommend
buying a copy to reference as you need it. Also, if you have the time,
think about joining a mailing list about SB. I am a member of a few of them
Go to www.yahoogroups.com and look up subscriber information for
SB-MomsandDads and SB- Parents. I learned a lot about SB when I joined
these groups. Your county should also have a Parent to Parent support
parent for you to chat with. If not, feel free to call me. My name is
Susan and you can reach me at the number listed on the SBANC website under
the Winston-Salem/Greensboro support group (Triad) information. Things
differ from county to county, but you should be able to apply for CAP-C or
CAP-MR/DD, which is a medicaid waver program. This may pay for things that
your insurance doesn't cover. Also, look into Special Children's Health
Program...also, this name may differ from state to state. In NC the main
office is in Raleigh. I am not too familiar with the program, but I can
find contact info if you need it and your hospital doesn't provide it. You
can also join the SBANC and get a newsletter about SB. You may be
interested in joining SBAA. I believe it is $25 to join and you get a
newsletter 6 times a year. SBAA has a national conference every year and
SBANC is planning on a parent retreat this year instead of the conference.
Still in the planning stages, but things to think about. Again,
congratulations on your new family member! Do you know if you are expecting
aboy or girl?
Susan
susancollins@...

-------Original Message-------

From: sbaofnc@yahoogroups.com
Date: Saturday, February 08, 2003 7:48:38 AM
To: sbaofnc@yahoogroups.com
Subject: [SBAofNC] Spina Bifida

Hi I'm Cynthia from monroe NC, 22 weeks pregnant and last 2 weeks ago I had
an ultrasound and the doctor found out that the baby had a spina bifida
L5-L4, I don't know much about this birth defect but because of the
supportive parents with spina bifida baby help me to understand and know
some facts about spina bifida. Does anyone of you knows an organization that
could give me information who can support and help my baby's situation?
Thanks and God Bless!


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