flgirl73
05-11-2009, 02:42 PM
I'm a mom of an incredibly active little guy named Ayden. He is almost 7 years old and in the
1st grade.
Ayden was born with Spina Bifida, more specifically, Lipomyleomeningocele and has a tethered spinal cord. He had surgery to un-tether his cord in 2002 when he was 11 months old. Since Lipo is not an open area in the back, patients usually have surgery around 4-8 months of age vs. at birth like most other SB patients. His level is L5, S1. He is not in a wheelchair nor does he have a shunt. At this time he is experiencing some bladder issues and we are taking him for testing. He does experience leg soreness and weakness at times but overall is very lucky. Ayden is a patient at Nemours Children's clinic in Orlando, FL where he is seen annually by several specialist: orthopedic, neurology and urology. Prior to our annual visits, Ayden has several tests done that are reviewed when we go by the team. These tests usually consist of an MRI, ultrasound of his bladder and a CT scan.
I have recently learned that Lipomyleomeningocele is not caused from the lack of Folic acid. It is also not genetic. There is nothing you can do to prevent this birth defect. On a more personal note, this is something I have felt "guilt" over for almost 7 years, thinking I kind of had something to do with his SB. Although it does not change anything it is important to me to help other mom's realize this important bit of info. too. Regardless, I would not change who my child is, I love him just like he is. He is my gift from God.
I look forward to making new friends with children in similar situations. I am very interested in learning all that I can to help my child have a very active, successful life with SB. As issues arrise I would love to have a group like this to come to for knowledge, experience and support.
I have also just found several groups on Facebook pertaining to Lipomyleomeningocele and TCS specifically that may be helpful to others. If you have a page on FB, do a search in groups and you'll find them also. I'm open to learning all that I can to help our family become educated on SB.
I look forward to making new friends here. :)
1st grade.
Ayden was born with Spina Bifida, more specifically, Lipomyleomeningocele and has a tethered spinal cord. He had surgery to un-tether his cord in 2002 when he was 11 months old. Since Lipo is not an open area in the back, patients usually have surgery around 4-8 months of age vs. at birth like most other SB patients. His level is L5, S1. He is not in a wheelchair nor does he have a shunt. At this time he is experiencing some bladder issues and we are taking him for testing. He does experience leg soreness and weakness at times but overall is very lucky. Ayden is a patient at Nemours Children's clinic in Orlando, FL where he is seen annually by several specialist: orthopedic, neurology and urology. Prior to our annual visits, Ayden has several tests done that are reviewed when we go by the team. These tests usually consist of an MRI, ultrasound of his bladder and a CT scan.
I have recently learned that Lipomyleomeningocele is not caused from the lack of Folic acid. It is also not genetic. There is nothing you can do to prevent this birth defect. On a more personal note, this is something I have felt "guilt" over for almost 7 years, thinking I kind of had something to do with his SB. Although it does not change anything it is important to me to help other mom's realize this important bit of info. too. Regardless, I would not change who my child is, I love him just like he is. He is my gift from God.
I look forward to making new friends with children in similar situations. I am very interested in learning all that I can to help my child have a very active, successful life with SB. As issues arrise I would love to have a group like this to come to for knowledge, experience and support.
I have also just found several groups on Facebook pertaining to Lipomyleomeningocele and TCS specifically that may be helpful to others. If you have a page on FB, do a search in groups and you'll find them also. I'm open to learning all that I can to help our family become educated on SB.
I look forward to making new friends here. :)