Tuesday, July 31, 2012

Time Off

I never intended to go so long between my first post on here and the next one. Between taking Matt to school and picking him up, all of his therapy appointments last week and a much dreaded ophthalmologist appointment to follow up on his CVI issues, I have dropped some of the plates that I'm trying to spin. I am usually very organized and punctual when it comes to appointments, fueled by massive amounts of iced coffee and a manic fear of showing up anywhere even a minute late. I don't like letting things slip out of control and throw off the schedule. What's that expression again..make a plan and God laughs?

This week has been chaos because the kiddo is sick and that means no therapies and no school until he is feeling better. This is no easy task since he has been on the Ketogenic Diet for a month and all liquid over-the-counter meds are forbidden because of sugar content. I am lost without a schedule to follow now apparently. Since he is home we've been taking advantage of our down time to work on some skills his speech therapist wants to him to start recognizing and implementing. First is the "Get the/Give me the" rule, which works on two skill sets for him.  First, the "Get the..." rule works on his motor skills because he has to locate and grab the object, not so easy with visual impairment and poor muscle tone and grasping skills. Once he has the object in his hand, I put my hand out and tell him, "Give me the..." and let him drop it into my waiting hand. According to our superstar speech therapist, Miss Melanie, this will teach him to 1.) Recognize the object he is grabbing by name,  2.) strengthen his grabbing skills, and 3.) Teach him Cause and Effect, which we will need to master before we get  an Adaptive Communication Device down the road.

But, this week hasn't been all about the work. As much as I hate when he is sick, Matt and I both needed a break. We've been doing a lot of snuggling on the couch with a cozy blanket and watching all things Cars. Listening to him laugh when he sees Lightning McQueen and Mater is literally one of the best sounds in the whole world. I love this time with my little guy and it makes it worth all of the plates that I spin to keep him happy and healthy.

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!