My adventure truly began way, way back in August of 2003. I was 6months old and my pediatrician noticed that I was spotted like a leopard! My mom and dad soon learned that I was indeed spotted, but not a leopard. Dr. Mira Irons at Boston Children's Hospital diagnosed me with a Neurological Disorder called NEUROFIBROMATOSIS 1( you can find more information at www.ctf.org ). When I was a baby I didn't reach the milestones that I should have at an appropriate age. I didn't sit up until I was almost 1yrs old, I didn't walk until I was almost 2 yrs old, I didn't speak in sentences until I was 5 yrs old, etc... We moved to Florida when I was 18 months old and I started taking Physical Therapy, Occupational Therapy and Speech Therapy when I was around 3 years old. I also never slept through the night. I woke up every 3 hours since I was born! Crazy huh? When I was 4 , mom and dad put me into preschool with typical kids and I did not do well at all. I was hyper, I couldn't concentrate, I was very literal, I couldn't take being with 15 other kids in a small classroom and I was soon asked to leave the private preschool, and that is when my mom and dad first heard the words Autism and ADHD from my pediatrician. The Dr had been thinking it for a while, but didn't mention it until then. So I started at a new school in something calling ESE and they knew how to teach me and gave me my therapies. At 4 yrs old I also had my first baseline MRI done and that showed a tumor growing on my optic nerve. That is when mom and dad knew that Neurofibromatosis could be scary. At 8 yrs old the pediatrician noticed my back was a little wonky and sent me for an x-ray and that is when I learned I had scoliosis! It started off at 9degrees and very mild. It is now at 19 degrees. It makes my back ache sometimes. Then I was 9 and this is where my adventure really started to change. One day getting onto the bus I stumbled and couldn't seem to get my balance back, it was weird, but mom knows I am clumsy so wasn't too worried. But later that day my teacher called mom because she was worried. I just wasn't acting right, I was kind of out of it, so mom rushed and picked me up from school. By then I was walking into door ways and parked cars, I was slurring my words and just not myself. My pediatrician sent me for a CT scan and it showed a severe sinus infection. You see I don't feel pain the same way everyone else does. No one knew I had this infection going on. So they put me on antibiotics, but after a few days I still wasn't acting right, so mom brought me to the neurologist. The neurologist admitted me to the hospital for a 3 day EEG because he thought I might be having seizures, but all it did was show I didn't have epilepsy, they still weren't sure. So they sent me for an MRI and really that MRI is what started my final steps into this great adventure. It showed a lesion in my pons that was growing and that is when I started going to see Oncology. They started MRI's every 3 months and that is what I have been having for the last 2 years! First it showed the lesion (tumor) in my pons, it keeps on growing and changing. The oncologist decided to add my spine to the MRI to keep ahead of everything and those results showed 2 spots inside my spinal cord and the next MRI showed 2 more, so now we consult with Neurosurgery. My optic glioma has remained stable, but now my other optic nerve seems to be enlarging. Another lesion popped up in my cerebellum and that is growing and changing. The pons lesion and the cerebellum are beginning to show signs that they are changing and turning malignant. I go back in November to see how they are doing. I started to have problems with my eyes tracking things and my ophthalmologist thinks it is from the tumor in my pons. Around this time I began having horrible migraines. They would cause me to scream and double over in pain. My neurologist gave me some migraine/anti seizure medication and it has helped my headaches so much! My anxiety has also worsened to the point where medication was needed. I also started seeing a podiatrist just this past September and she said that I having something called pronated feet? Anyway, I need this special insoles to help my feet and legs not hurt so much. They had to take molds of my feet and order me special shoes! If those don't work, then I will have to be fitted for leg braces. I know this sounds like a lot of stuff to deal with, but you wanna know what? I love life! I love waking up every single day and seeing the sunshine or the rain drop down from heaven. I will never ever let anything stop me from being happy, and now I get this phone call out of the blue that says they can make my wishes come true! I am going to leave for this arduous trek on October 4th and I am going to brave the vast concrete jungle to get to Orlando and brave the wilds of Sea World, Universal Studios and Islands of Adventure, and all of the Disney Parks! I can't wait to embark on this brave new adventure! I will let nothing stop me!! BON VOYAGE!! Stay tuned for my Birthday Card Extravaganza in February!!
