I know that there are so many families who struggle every day to take care of a special needs child. In so many ways, our struggle is better than some; but also worse than some. Every child is different and every family struggles differently. When Ryan was born he spent 11 days in the NICU (neo natal intensive care unit). His first surgery was on the day he was born, to close up the hole on his spine. His next surgery was the next week to implant a shunt. This is under his scalp with a drain that goes into his abdomen. This is what siphons off any excess spinal fluid. Evidently that is a common issue with spina bifida patients. All this was so new to all of our family. We had never heard any of these terms before and to think of a baby having to endure all of this was terrible. We were so elated when Ryan got to come home. However, we were also terrified – at least I was. Mom and Dad were probably still in shock, but they were more than capable to take care of him. There was still the issue of the tumor behind his eye, which bulged and dealing with his incisions from surgery, and also the fact that he was a newborn.
I hope that going thru his story will help some new families who are dealing with similar situations. Things have changed over the years, but some things still remain the same.
I hope you enjoy his story!
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