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Spina Bifida

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discussion title:
 

OCTOBER ROLL CALL - ANYONE?

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  2650.1
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from:
  bendcoles  Member Icon
date:
  10/1/2004 12:51 am

I am trying to see that this board is not lost here at iVillage. If you lurk please sign in to show that this board is worth keeping! I'd really hate to lose this for those moms who really need help.

Thanks!

http://messageboards.ivillage.com/iv-ppromance/

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last visit to this board
12/9/2004


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discussion title:
 

OCTOBER ROLL CALL - ANYONE?

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  2650.2 in response to 2650.1
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from:
  deb4kids1angel1due  Member Icon
to:
  bendcoles  Member Icon
date:
  10/6/2004 1:24 pm

Sorry
The board is not helping. No one posts here. I am 29 weeks pregnant with a SB child and after having a wonderful experience with the expecting board, I was hoping for so much more than I got here. SBAA is not very helpful either. I do not mean to be so gloomy about it but I wanted more support and between SBAA, this board, and what the neurosurgon said (spina bifida just does not occur as much anymore), I feel unsupported. I was on 4mg folic acid pre-conception and it did not help.

Debbie

 
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1/3/2005


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discussion title:
 

OCTOBER ROLL CALL - ANYONE?

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  2650.3 in response to 2650.2
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  glittergirl_76
to:
  deb4kids1angel1due  Member Icon
date:
  10/6/2004 1:53 pm

It does happen as much, but with new technology and early detection many women choose to terminate the pregnancies. Sad, but true. I have a 7 year old with SB and like you I knew before he was born. Have the doctors given you a level and size of the defect? My DS is L3 and he walks with a walker and uses a wheelchair long distances. He is not shunted and has bladder/bowel issues, but we are working through those. I was told of all the things he wouldn't be able to do, but we didn't worry about that. All the things he can do are amazing. He's very smart, funny, cute, and loving. One of the best things about him is he's comfortable in his own skin. He doesn't worry the other kids run and jump around so I don't either. Are you having a c-sec? Is this your first baby?
Bridget and Jared 7 with sb L3:)
 
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discussion title:
 

OCTOBER ROLL CALL - ANYONE?

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message #:
  2650.4 in response to 2650.3
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from:
  deb4kids1angel1due  Member Icon
to:
  glittergirl_76
date:
  10/6/2004 3:47 pm

My daughter has a sacral lesion and the doctors are still planning for a vaginal birth since this is my 5th baby (roomy I think is how they put it). I would never abort no matter how bad the defect, even with imminent death, I would not abort. Her hydrocephalus has not increased and I just need to make it through 2 more months. I have a hard time finding others who are able to talk about their experiences with NICU, surgeries, doctors, and more. I am really concerned about how this will affect my other 4 children. Thanks for responding.

Debbie

 
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8/1/2005


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discussion title:
 

OCTOBER ROLL CALL - ANYONE?

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  2650.5 in response to 2650.4
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  deenasuprema  Member Icon
to:
  deb4kids1angel1due  Member Icon
date:
  10/18/2004 11:09 am

I just found this board, i didnt even know it exsited till last night! I have a 4 yr old with SB and hydro. I've been involved in many internet support groups. If anyone ever wants to chat, or wants some support, questions anything feel free to e-mail me deenasuprema@yahoo.com or catch me on yahoo im deenasuprema.

I'll be checking back here more often now that i know it exist, its so far down on the boards list i didnt see it till now. Perhaps if we started "adverstising" it more, especially on the expecting boards. I know just recently there was a lil one diagnosed with SB and Hydro on one of those boards.

Deena

 
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