Hello, this is my first time writting here, my son was diagnosed with spina Bifida  L4 L5 and hydrocephalus when I was 16 weeks pregnant, our story is very similar to many people of this forum. He is 16 months old and he already had 8 surgeries. (2 spinal closures, 5 shunt revision, 1 deflux)  We had  bad luck with shunt malfunction. At the beginning was very hard, now we always try to live always happy and enjoy every moment with our baby.

 I Cath him every 3-4 hours, he also takes ditropan and bactrim daily.  He wears afos, he doesn’t walk yet but he is starting to pull out to stand, and do a few steps with support.

He had reflux to his kidney (level III), which now is being controlled thanks to the “deflux” , which I highly recommend to try it if your child has the same problem.

Anybody have recommendation of orthopeadics? I am looking for second opinion about his legs which one turn inward and the other outward, that’s why he just do a few steps and then he fall.

Also, I am going to the SBA National Conference in Anaheim June 26-29, anyone else going?    I would love to meet many of you in person,

Regards,

Marcia