http://health.groups.yahoo.com/group/spinabifidacentral/ Spina Bifida Central -A Place To Find Support And Share Experiences Sun, 08 Nov 2009 04:26:46 GMT Tanya Anson http://health.groups.yahoo.com/group/spinabifidacentral/message/7771 http://health.groups.yahoo.com/group/spinabifidacentral/message/7771 Hi Amanda, First of all Spina Bifida is not a disease. It is a birth defect where the spine doesn't form properly. There are many very good and informative Sat, 07 Nov 2009 18:51:32 GMT Sara Schneider http://health.groups.yahoo.com/group/spinabifidacentral/message/7770 http://health.groups.yahoo.com/group/spinabifidacentral/message/7770 The 1st year is when you need it most! And from what you said here, you'll love all the vendors they have at conference! A lot of "well isn't that cool! I Sat, 07 Nov 2009 18:16:44 GMT totlybatty http://health.groups.yahoo.com/group/spinabifidacentral/message/7769 http://health.groups.yahoo.com/group/spinabifidacentral/message/7769 Thanks everybody, So far I've seen the PNP at the spina bifida clinic here and she recommended a few doctors, all in the same clinic I think, which are Sat, 07 Nov 2009 17:01:30 GMT LightningGrl2121@... http://health.groups.yahoo.com/group/spinabifidacentral/message/7768 http://health.groups.yahoo.com/group/spinabifidacentral/message/7768 Absolutely no one knows. We never really got a clear answer from the doctor. He was fired from the hospital shortly after due to other reasons. From what we Sat, 07 Nov 2009 10:35:50 GMT Tracy Cook http://health.groups.yahoo.com/group/spinabifidacentral/message/7767 http://health.groups.yahoo.com/group/spinabifidacentral/message/7767 Summer, My daughter is having tethered cord surgery on Tuesday. If you dont mind me asking what happened with your tethered cord surgery for you to lose that Sat, 07 Nov 2009 10:30:00 GMT Tracy Cook http://health.groups.yahoo.com/group/spinabifidacentral/message/7766 http://health.groups.yahoo.com/group/spinabifidacentral/message/7766 Hi Sarah,' I have a 10 year old little girl named Kalle that was born with SB.  The best advice I can give you is question the doctors, learn as much as you Sat, 07 Nov 2009 03:32:05 GMT sunshineku04 http://health.groups.yahoo.com/group/spinabifidacentral/message/7765 http://health.groups.yahoo.com/group/spinabifidacentral/message/7765 Hi Summer. I think my SB is L3-L4 maybe. Not really sure. I have had about 20 surgeries. I hope I won't have anymore. The last surgery I had was when I was 18. Fri, 06 Nov 2009 22:37:20 GMT LightningGrl2121@... http://health.groups.yahoo.com/group/spinabifidacentral/message/7764 http://health.groups.yahoo.com/group/spinabifidacentral/message/7764 Welcome Shana! My name is Summer. I am 26. I live in Florida. I of course have spina bifida. At birth I was a T10 level with no feeling from hips down. I am Fri, 06 Nov 2009 22:25:53 GMT Annie Brown http://health.groups.yahoo.com/group/spinabifidacentral/message/7763 http://health.groups.yahoo.com/group/spinabifidacentral/message/7763 I have a question about something I am clueless about. Non-profits. Does anyone have any experience with running a non-profit group? I was thinking the Fri, 06 Nov 2009 21:37:25 GMT Sara Schneider http://health.groups.yahoo.com/group/spinabifidacentral/message/7762 http://health.groups.yahoo.com/group/spinabifidacentral/message/7762 Congrats, Sarah! My BIGGEST piece of advice would be to make a priority to attend the SBAA national conference every June. It's going to be in Cincinnati, OH Fri, 06 Nov 2009 19:57:29 GMT Shana Moore http://health.groups.yahoo.com/group/spinabifidacentral/message/7761 http://health.groups.yahoo.com/group/spinabifidacentral/message/7761 Hello everyone, My name is Shana. I'm 23 years old and I have Spina Bifida. My SB is at my lower back. I have some feeling in my legs. I can't feel from just Fri, 06 Nov 2009 19:09:44 GMT Wendy W. http://health.groups.yahoo.com/group/spinabifidacentral/message/7760 http://health.groups.yahoo.com/group/spinabifidacentral/message/7760 Hey Sarah,   Welcome to the group and congratulations on your upcoming birth!  My daughter was born in May with SB.  It was diagnosed when they found fluid Fri, 06 Nov 2009 18:41:34 GMT Heather kane http://health.groups.yahoo.com/group/spinabifidacentral/message/7759 http://health.groups.yahoo.com/group/spinabifidacentral/message/7759 Sarah, Congratulations on your soon arrival. As you will hear over and over again on this sight, these little ones are so special. She is going to be the Fri, 06 Nov 2009 18:29:05 GMT totlybatty http://health.groups.yahoo.com/group/spinabifidacentral/message/7758 http://health.groups.yahoo.com/group/spinabifidacentral/message/7758 I'm pregnant with a little girl with spina bifida, due in Jan. Definitely nervous, nervous about delivery, nervous about caring for any baby (she's my first), Thu, 05 Nov 2009 10:47:32 GMT Kelly and Bill Rumbaugh http://health.groups.yahoo.com/group/spinabifidacentral/message/7756 http://health.groups.yahoo.com/group/spinabifidacentral/message/7756 ReAnn-  Can you write to kristina his clinicl asistant? I believe the only place to get them is from him. Brighton's came directly from his orthotist. You can