This story starts when I was 32 weeks pregnant with Ruby Magnolia. I had a routine sonogram and the technician found that Ruby had agenesis of the Corpus Callosum. A prenatal MRI confirmed partial agenesis of the Corpus Callosum. The pregnancy and birth were normal, and Ruby seemed perfect until she was six weeks old. That’s when she had her first seizure. We spent three days in Phoenix Children’s hospital, they put her on Phenobarbital, and sent her home. Ruby had no more seizures, seemed normal, and was developing fine. She smiled, held her head up, cooed at us, and even laughed sometimes until she was two and half months old. Ruby started having seizures daily, and we spent more time in the hospital. She had a lot of testing and was diagnosed with Aicardi Syndrome. Ruby’s development regressed shortly after the seizures started. She stopped looking and smiling at us and started sleeping most of the time. We were devastated and felt that we had lost our baby.
Ruby is now seven months old. She gets PT and OT once a week. Ruby loves water and hates tummy time. She has been on Phenobarbital, Topamax, Keppra, Depakote and most recently Sabril. She is also on the Ketogenic diet. She has become more alert since she has been on the Ketogenic diet. She started Sabril almost two weeks ago, and we are very excited about the results so far. She has gone from having 5-15 clusters of severe infantile spasms a day to having 2-6 very mild clusters a day. She has even started smiling again. 🙂
Ruby is now 17 months and has gone through many changes in the last 10 months. She still has infantile spasms every day. Ruby is very happy and smiles all the time…at anyone who pays her any mind! She has learned to grab, hold, and put her pacifier in her mouth with her left hand. She still doesn’t use her right side much, but she does roll to her right now. She likes to roll onto her tummy and fall asleep (instead of doing push-ups). She sits with assistance and has pretty good head control. She receives PT, OT, ST and sees her DSI weekly.
Ruby has had some health issues related to swallowing, reflux and aspiration problems and only eats through a gj-tube right now. She had the tube placed a few months ago and has been healthy since, so we will start introducing foods orally again soon 🙂 Ruby had a side effect(white matter change) with Sabril and is now on Onfi, Keppra, and Depakote for seizures. She also had a VNS placed a few months ago.I think it’s working well but it takes a while to get the full benefit fo the device.
We are still taking each day as they come and trying to enjoy our little jewel as much as possible!