My Little Lily

My Little Lily was born in 2016. She is a twin. Her sisters name is Anna. We all got a surprise when Lily was born as we were expecting her to be a 7.5lb baby but she was only 4lbs14oz. She had trouble feeding as she wouldn't latch and then her blood sugars dropped so she went to NICU. Here they discovered she had low platelets. They initially thought Lily had JMML. It has been a long road of tests and monitoring but eventually we got a diagnosis after Lily had a bone marrow biopsy when she was 6 weeks old where they discovered the presence of PTPN11 then they did a hair sample test to check if it was in her Germline which it was so that confirmed Noonan's. So far Lily is doing really great. She seems to be on the lower end of the spectrum. She's a little bit behind Anna developmentally but she's getting there. She's my little birdie and she's the boss!!