April 17th is a special day in our little family of three. Joe proposed to me on April 17, 2000, and after I called him a liar for tricking me, I said yes to marrying him.
And 10 years later, after a brief cancer scare for me and years of infertility, it was the day of our precious baby boy's first smile on his 5 week birthday. Matthew and I were in New Jersey with my in-laws to see Joe's grandmother who was very ill and had major surgery the day before. She was afraid that she would pass away and never see Matthew so we went to surprise her.
That same day our lives were forever changed when Matthew had the first of many seizures in just a few hours. The day we were thrown head first into the unknown.
Matthew went through numerous CT scans, MRIs, blood tests, genetic testing, video EEGs,and 3 spinal taps in a week. They sat us down at a conference table in a tiny room and told us that Matthew's brain was shutting down for seconds at a time and when his brain was functioning it wasn't synchronized and working together. They gave us a grim prognosis of Ohtahara syndrome and released us after a week of being there.
We were told a lot of different things by a lot of specialists that never proved to be true. Matthew doesn't have Ohtahara, his brain isn't shutting down and it did finally start working together. We were told that he would need a feeding tube, so we worked to find him excellent occupational and speech therapists to help us with feeding issues. His favorite foods are now chicken nuggets and macaroni and cheese, just like any other kid his age. He does occupation and physical therapy at school and at an outside rehab center. He works with a vision teacher to improve his tracking skills and with a teacher of the deaf and hard of hearing. He rolls all over our house, he dances in his gait trainer and he flirts shamelessly with every woman he meets. He loves Cars (especially Mater), Mickey Mouse Clubhouse, cars and trucks, and music. He has exceeded all we were told his life would be and continues to work hard every day.