Precious time for battling toddler Kody Tobler and parents

Kody Tobler looks ready to ride, but on the inside his battler's body is failing.Almost three years after he was born to a life of tubes, medicines and procedures, the Warilla toddler spent last night at home in his own bed for the first time.His homecoming came after parents Kristy and Justin spent 12 weeks at Randwick and Wollongong hospitals learning how to handle the complex routine that keeps their son alive.Kody's six daily medication sessions must be administered like clockwork. There is a central line to be handled, and he is fed through a gastrostomy button.Mr Tobler said the care was time-consuming, but a small price to pay for precious time together."The [doctors] say that we have about five or six months left with Kody and to enjoy it," he said."We don't know if we're going to have him for next Christmas. His insides are deteriorating on us."Today is the most joyful day of our lives."Kody has been a permanent resident of Randwick and Wollongong hospitals since he was born on January 27, 2008 five weeks premature and with part of his small intestine on the outside of his body.The condition, gastroschisis, limited blood flow to the organ, forcing doctors to remove all but 27cm of it.Originally not expected to live more than 24 hours, he defied the odds but was confined entirely to hospital until August last year, when he was allowed home for eight-hour snatches.Mr Tobler has started a support group for families dealing with gastroschisis and short gut syndrome, which is accessible at the Kody Tobler Support Page on Facebook.He said he was focused on filling Kody's time with positive experiences.To help call on 0447 977 171.