Welcome to John's CaringBridge site! We are using it to keep family and friends updated in one place during John's SDR journey. We appreciate your love, support and prayers along the way!
John was born on May 11, 2012 at 28 weeks via emergency c-section, after I got an infection in my cervix and went into premature labor. We spent our first 7 1/2 weeks at Children's Hospital in the NICU. John was diagnosed with Periventricular Leukomalacia (PVL) while we were at Children's after a brain ultrasound. We were told that these cysts were very small and that they did not know what the outcome would be but did warn us of the possibilities. At 1 year, John was still not sitting independently or crawling, so we went to see some specialists at Gillette Children's Specialty Hospital. John was diagnosed with mild Spastic Diplegic Cerebral Palsy at around 15 months. John had his first Botox injections at around 2 and shortly after crawled for the first time. Since then, with Botox being done every 4-6 months, John progressed to pulling himself up to stand and cruising along furniture and to most recently walking with a reverse walker. In June 2017, John did a gait analysis lab and we met with a panel of doctors at Gillette and they agreed that Selective Dorsal Rhizotomy (SDR) surgery would be best for him to prevent further damage being done to his joints and bones by the spasticity in his legs.
So John is scheduled to have SDR surgery on September 27, 2017. After the surgery John will spend around 6 weeks in the hospital doing intensive in-patient rehabilitation.
For more information about the procedure, go to: https://www.gillettechildrens.org/conditions-care/selective-dorsal-rhizotomy-sdr-surgery/what-is-rhizotomy-or-sdr-surgery