Tuesday, July 17, 2012

Welcome to Our Little Corner of the World

My name is Brandi, I'm a wife and stay-at-home mom, and this is my family:

My husband Joe is an elementary school teacher, although he is no longer in a classroom position. He deals with more of the testing and administration stuff now and he loves his job. We have been married for 10 years and have been together for almost 13 years. Two years ago, after dealing with many years of infertility and health issues, we were finally blessed with our beautiful baby boy, Matthew. Prior to Matthew's arrival I ran a school health clinic for 5 years and cared for middle school-aged kids with a variety of health issues. I loved my job, but as soon as Matthew was born everything changed and I became a stay-at-home mama.

Our life is a lot like every other families, and in some ways very different. We are first time parents of a child with special health needs. When Matthew was five weeks old we were visiting family in New Jersey when he began having unexplained seizures, as many as 7 in one hour while in the emergency room. Since we were so far away from our home in Florida, Matthew was admitted to the closest PICU for observation and testing. This by far, was the worst and scariest week of our lives. After a lot of testing and false diagnoses, we were discharged with an epilepsy diagnosis, a lot of medication, and orders to follow up with a neurologist once we got home.

As we would discover over the past two years, epilepsy was just the tip of the iceberg. We would learn a couple of months later that Matthew was born with genetic abnormalities. His third chromosome had micro-deletions and his fifth chromosome had a section that is inverted. A few months after that we learned after that he has bilateral mild-to-moderate low-frequency hearing loss and would need hearing aids. We went through a stint of plagiocephaly, where the right side of his head was flat on the back. He wore a molding band on his head for 6 months and it made some improvement on his head shape. In October 2011, he was diagnosed with microcephaly due to his head not growing according to normal rates for kiddos his age. Last month after a year of wondering, he was finally given a formal Cerebral Palsy diagnosis by his neurologist. There isn't any one diagnosis that we can use to explain all of his medical issues, so we just go on the best we can and keep living our day-to-day life.

This is the chronicle of our lives--the good, the bad, the messy and sweet.

Welcome to Mattyland!

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