Little Luke

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It didn't take long after the wedding to find out we were pregnant 🤰🏼And expecting a little boy 👶🏼We couldn't be any more excited! The day finally arrived and labor and delivery was a breeze Luke came into this world on 7-31-16 a beautiful 7lb 8oz sweet baby boy. He was perfect! 😍😍 Our first trip to the doctor went ok he needed to regain his birth weight but that was typical. It took him 3 weeks to regain his birth weight. And then he was still having trouble gaining weight. At his three month appointment something didn't seem right to the doctor. He wasn't visually tracking so she sent us to a  neurologist and an eye doctor! They thought Luke may be blind. neurologist sent us for an eeg, which came back normal. The eye doctor checked his eyes and they looked good too. But the peds doctor wasn't sold, she really thought something was off. She sent us back to the neurologist where three specialists looked at Luke and decided to send him for a brain sono, it came back normal! So back to peds we went. Still unhappy with progress she sent us back to the neurologist this time worrying that he had infantile spasms. I recorded him having one of these spasms but the neurologist kinda brushed it off. The very next day Luke was inconsolable he was miserable I just knew something was wrong. At 10pm we headed to the children's hospital. The first peds doctor thought we were over reacting but the second doctor say the spams and admitted us. From there we did a battery of tests 48 hour video eeg, normal. Spinal tap, normal. Blood work, normal. MRI, abnormal. Luke's pons and cerebellum is small. He was diagnosed with PCH type currently unknown. We were told it's a rare genitic disorder that is terminal. We were crushed. Todd and I cried for what seemed like years, we cried until there were no more tears left. 💔💔💔 Then we tried to find some hope. We found a new neurologist who knew a lot more about the disorder, we found a support group on Facebook, we looked to our community for support and found an overwhelming amount. We now are living day by day and loving up on our beautiful little boy. We are a family. 👪.