Hi all my name is Shawna I am 23 yrs. old and I was born with Spina Bifida Mylomengiocle. About 3 years ago I developed Kidney stones and I have been going...
I am just starting to cath Jane (age 4) and she was great to start with for the first 2 or 3 but now has become hysterical when I try to do them. I have tried...
Hi Rachel I wish you lived in the US she could have an MRI be detethered and she would have no more problems. Our kids with myelo SB don't have feeling in...
Hi Rachel I wish you lived in the US she could have an MRI be detethered and she would have no more problems. Our kids with myelo SB don't have feeling in...
Hi my name is natalie and im 25 weeks pregnant and my baby had fetal surgery 2 weeks ago im in nashville TN is there anyone who has had fetal surgery before?...
Hi Cindy. Thanks so much for replying. We are using an 8 but we are back at the renal nurse today so I am going to ask for 6's. I am not sure whether Jane...
Hi Natalie Congratulations on the upcoming birth of your baby is it a boy or a girl? What level did they tell you the baby was and just out of curiousity what...
HI CINDY Im having a boy his name will be Xander the doctors said his starts at L3 to S1 we knew before the surgery that there was a chance that doing the...
hi rachel, sorry for not being in touch, have had no end of problems with tia so by the time you read this you would probably have seen the renal nurse, if you...
-Hi Elaine. How is Tia doing? Hope you are all OK and coping alright. We saw the nurse yesterday and she was great and said this is all perfectly normal and...
I have spina bifidia and i took a job working with my mother just fixing her a meal and just sitting with her just three hours a day , but now social security...
Hey everyone! I found out today that my insurance company (Tricare) is not going to cover my move to deliver my baby. Does anyone have any good fund raising...
Talk to someone high up at the insurance company not just the person that answers the phone. Also if they still deny it that's what the social worker is at the...
I just wanted to share my good news with all of you... I recieved an Honorary Doctorate of Ministry (with emphasis in Pastoral Counseling) the other day!!! I...
... you are being paid also is your mother on disability? the reason i am asking is that i know someone with epilepsy who is on disability, has a son with s.b...
I live in north carolina and yes my mother gets disability and since i have never work in my life i draw off of hers . so, since now i work for carolina home...
Hey Mindy, I think its wonderful that you received you Doctorate, I hope My daughter will pursue her dreams and not let what she has hold her back! Lindsey and...
Thank you for the Congrats!!!(SMILE) I am VERY happy and excited about it myself! As for your daughter not letting her SB stand in her way... I pray she...
Hi folks! Just thought I'd keep you all informed. Jane and i saw the uro nurse and our consultant on Weds morning. they are going to do a bowel biopsy in...
Rachel I don't know what you have to do but DO NOT let them butcher your child. She has SB Occulta there is no way she will need a mitrofanoff and ace. For a...
Hi How are you? I am alright. I broke up from college on Friday for half term. On Saturday i went and had my hair cut and straightened. Last Tuesday i...
HI Cindy. Thanks for the message. Unfortunately Jane is one of the 2% of children with SBO who are severly affected . Apparently she has Occult spinal...
i just found out that my daughter who has hydrocephalas and spina bifida was denied for disability. they said her condition does not interfere with her...
... the help of any health professionals who are treating her as they should be able to back you up by writing letters, also make sure you describe how she is...
... message.and i think that you should appeal.how old is your daughter?i hope i can talk to later.you can email me to milagros_garza@yahoo. i hope it help a...
... stander that will help her to stand. but i don'w believe that she is going to be able to walk with out a walker or something because she cannot hold her...
... stander that will help her to stand. but i don'w believe that she is going to be able to walk with out a walker or something because she cannot hold her...
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