Luke has appointment with neurosurgeon, Dr. Iantosca, from Hershey Medical Center

It seemed forever before we had our first appointment with a neurosurgeon. We had researched Chiari and Syringomelia endlessly on the Internet but our visit with Dr. Iantosca proved to answer all of our questions. He spent 1 1/2 to 2 hours with us, explaining everything that would be done now and that would possibly need to be done in the future.

Luke gets an MRI of his Brain

This MRI was a bit quicker since all it was imaging was Luke's brain. Again, he was brave when they stuck him with needles to give the IV for anesthesia. He cried for a minute but shrugged it off as the nurses and I distracted him with funnier things.

It was another baseball day, and he would not let another one of these "MRI"s interfere with him playing. Against the advice of the doctors and anesthesiologists, he played baseball. No reaction occurred since he was pretreated for the dye allergy.

Shriners calls with bad news: Luke has Syringomelia and Chiari Brain Malformation

The MRI was to be a precautionary test to rule out any rare causes of Scoliosis. Far from it, it "ruled in" two more serious disorders. We were told that Luke had a syrinx in his spinal chord and that we needed to see a pediatric neurosurgeon. He also had a significant Chiari Malformation. Janet Cerrone, Physician Asst from Shriner's, phoned in an order for an MRI of the brain and explained to us what it was that we were dealing with.

Within 2 hours I knew I wanted to visit the Chiari Institute in NY. This was a world class facility for treating Chiari malformations, Syringomelia, and other brain disorders. Unfortunately, the insurance coverage for the institute was considered "out-of-network" meaning a special condition in the Blue Cross (Federal) insurance agreement. It just so happened 5 months ago, I switched my coverage for handling out-of-network expenses (75% coverage) to coverage of 0% for slightly cheaper insurance. Who would've thought?! I can switch back to that plan however I would have to wait 5 months until November to do it...and that was not an option for Luke. Things have suddenly become urgent.

Luke gets an MRI of his spine

Luke was a real trooper when he went in for his first MRI. Later that evening was a little league peewee baseball game; this would've been his first game all season and he was so excited to play he wore his baseball uniform to the hospital. He had been too shy to play in the regular baseball season, but this day he did not want to be denied his opportunity to play.

He cried some when they gave him an IV for his anesthesia. The MRI went well, however, on the way to the ball game afterwards, he had a strange reaction where his face got very blotchy with white and red color. He looked slightly puffy as well. Rhonda called the hospital but when they asked her what anesthesia he had, she had no answer. Always write down what drugs they give him so you have that information in case of a reaction. Within 2 hours he was fine and he played a fabulous first baseball game of his life with 2/2 great hits and even an in-the-park "home-run" (thanks to the 50 million errors).