I found out about Julia Grace's SB when I was 20 weeks. We found out that
something wasn't right at 18 weeks due to the hydrocephalus. I will say
that I was almost glad it was hydro because my sister-in-law had a baby with
holoprosencephaly. Most babies with holoprosencephaly die prior to birth,
or shortly thereafter. I was happy that hydro could be treated. I was
pretty upset to then learn about the SB, but that was because I didn't
really know what it was. depending on who presents the info to you, it can
sound so much worse than we think it is. Our neuro that we were referred to
was excellent and gave us a very realistic prognosis. Julia Grace would be
born with severe hydro and her level was predicted to be about L5. It
turned out the hydro was severe and her functional level is weak L4 to
strong L3. This means she can move her quads very well (she has
exceptionally strong quads) and some hamstring movement and hip abduction,
but no hip adduction or movement below the knee (except a very weak,
nonfunctional plantar flexion in one foot). She was shunted at birth right
after her back closure surgery and then had revisions back to back at 6
weeks old. She is in a typical second grade class with no academic
modifications, actually going to "enrichment" for kids that are above grade
level. She reads at a 5th grade level, writes above grade level and is
working at grade level in math. She recently was tested for "AG" or
academically gifted program but we haven't gotten the results yet. She does
seem to have a slight learning disability in math, but since she is working
at to above grade level in math, we haven't started any resource or help.
What her LD is called is NLD, or NVLD...nonverbal learning delay. Some kids
with SB are more prone to this and the theory is that it has to do with he
hydro, but I know of kids with no hydro that also have this. It can sound
bad, but most kids learn to compensate. I don't think Julia Grace will ever
be a mathematician, but I think she will be able to function in society well
enough to count her change and such at the store. She attends church and
Sunday school with us, she has friends both at school and church and home.
She plays bells in choir, attends Brownies, does horse back riding, plays in
the pool and does most things other 7 year olds do. I wouldn't say her life
has been full of pain. I would say she has had more than her hare though.
She is a strong little girl, very empathetic to others, is very loving and
happy for the most part. She wants to be a pediatric physical therapist or
a pediatrician, or a teacher. She also wants to be a mom and have kids.
Julia Grace has handled her surgeries well. We have explained to her, as
she was older, what the surgery was for, what the doctors hoped to make
better for her and talked with her about it. We have also understood that
she was scared about it (who wouldn't be) and that she is right, it isn't
fair that she has to have surgery. I know her picture is around the web
somewhere and I will try to find a web address where you can see her. I
haven't updated in a long while but they are still around. Oh, JG started
wearing glasses around age 3 for one eye crossing (being weak). She wants
to try patching now so I need to call the opthamologist about it. I think
she is a bit tired of glasses. She has a purple wheelchair, a blue walker
with a pink basket and pink to purple (think Barney-she picked them when she
was almost 3) crutches. Oh, she got a Top End XLT Jr handcycle for her 6th
birthday! Cool bike!
Susan

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

From: sbaofnc@yahoogroups.com
Date: Saturday, February 08, 2003 9:57:35 PM
To: sbaofnc@yahoogroups.com
Subject: Re: [SBAofNC] Spina Bifida


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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