All Done

Feeling bad for myself that is. My husband is asking what happend next in the journey with Steven, so I will sum up here. We were in the hospital for about a week and a half. In this journey, we moved to several different rooms with different intensity of care as he recovered from the surgery. We knew this was only stage one in a long process of reconstruction and different "plumbing fixes" throughout the years. We were given a book on Bladder Exstrophy, different verbal warnings of what to expect - children with this condition are usually very short (HA, blew that one away!), they are prone to have several food allergies that are somehow related to latex allergies (well, no food alergies, just meds and medical tapes), they often get kidney and bladder infections (we've only had one in 12 years), a prescription for anitbiotics that we were told he would be on a daily dose of for several years, these children tend to be very bright, over-achievers, and often go into medicine to help others.

He came home in the body cast, with 3 tubes still in his belly - anyone ever try to diaper a baby in a body cast??? OMG, that was an experience I don't want to ever have to do again! It was a strange double diaper system to try to keep the cast clean. The family and close friends rallied around us, although there were some who came just to see what was wrong with the baby. Those were quickly weeded out. We went back to the hospital weekly for post-op checks and about 3 weeks out, he had to be re-casted because he had already grown so much. At 5 weeks, 2 tubes came out and the cast was removed, a very new experience for both him and me, after he was imobile for so long. I never got back the "scrunchie baby" time when they are newborn and are always curled up, but we finally got to cuddle more. More weekly visits and the last tube was finally taken out. He is such a trooper. We've undergone several more surgeries, some more major than others, and a couple of "procedures", and still have a long journey. Now we wait for him to finish growing and evaluate how everything has grown with him. It's a life long struggle, but he's always been a happy, laughing child, with a great attitude.