When I was about 30 weeks pregnant with my second son, Jack, my belly just grew over night. All the ultrasounds were normal, his organs were normal…he was a healthy baby. I had high amniotic fluid and they figured it was the gestational diabetes.
When he was born – he never cried. I saw them carry him away and I could tell he was just limp. He never opened his eyes and he didnt have a gag reflex..he was laying there as if he was in a coma. After 2 weeks…he opened his eyes! It was a big shock. After a few months we learned he could not breathe on his own and needed ventilator support because he did not have enough reserve. The doctors didnt have a prognosis for him but they definitley made us scared about taking him home. He was already proving the doctors wrong!
When we found out about his rare muscle disorder…it was almost relieving. We are living every day to the fullest. He smiles and laughs every time he sees our faces and has brought so much love and hope in our lives and has brought so many people together. He is such a fighter.