Ella

Hello everyone
Ella and I are happy to be on this site. We look forward to making connections with more people like us. After a routine ultrasound, brain cysts appeared. Getting answers is practically impossible when the child is not yet born. Not only is it hard to diagnose but Dr’s just do not communicate. Three different hospitals and I got to juggle them all. Once Ella had a ped and a birthdate, things got easier on that front. After a MRI the day after she was born we knew her brain was malformed. Early on came out and did an eval and we kept a close eye on Ella. The 1st 3 months went perfectly. She nursed, tracked,cooed, did push-ups in tummy time and was getting head control. I don’t have to tell you what came next. Sabril is our miracle drug. The seizures went from god awful to, not so awful. The Ketogenic diet also helped. Ella will be 11 months tomorrow. She has therapy 3-4x a week. She has a lot of head control, “talks” often, tracks, LOVES people (watches and follows them). Does some rolling over, recently stared putting weight through her arms and tries to use her hands and arms. You can see they do not do what she wants them too and it looks like violent thrashing. In addition to AS she also has schizencephaly, another potentially fatal and very rare brain malformation. Hope to talk with you often!