Elissa - posted on 06/17/2009 ( 17 moms have responded )
I wanted to create a place for everyone to introduce themselves and maybe find others who may have answers to their own questions. Use this topic to introduce yourself to everyone else and feel free to start your own topics. Our daughter, Jesmarie is now a three year old, active little girl who has overcome many obstacles and beat many odds. Born with lipomyelomeningocele, tethered cord, and syringomyelia she has had 2 surgeries (3 months old and 10 months old) to detether her spinal cord, debulk the lipoma, and drain the syrinx in order to prevent further neurological damage to her lower extemities. We did not know about her defect before she was born, we found out when she was born with a huge skin tag over a very large bump on her back/bottom. Although she looks completely functional on the outside (she walks, runs, jumps), Jesmarie started out with AFOs in order to learn how to walk and still has 2 ureters from her left kidney to bladder, disfunctional sphincter, and grade 2 reflux on the left side. She is on daily antibiotics to prevent urinary tract and kidney infections from the reflux. We follow the assumption that she is always re-tethered, but are waiting to operate again until her symptoms are bad enough to warrant the risks of surgery. That's pretty much all there is about us- how about you?