Tuesday, April 26, 2011

A New Journey

After years of fighting for our child to stay with us, the moment came on January, 15, 2011 where we had to say goodbye to his tired little body, and allow his spirit to live a wonderful and happy and healthy life away from us, in Heaven.  Since that moment, my life as a warrior mother has changed.  My goal from this blog is to share our journey, my knowledge and my compassion for families dealing with Autism and Epilepsy. 

Caleb was diagnosed with Autism (PDD-NOS) in 2005. We did a combination of Floortime, Relationship Development Intervention, Applied Behavior Analysis, TEACCH and Picture Card Communciation Exchange interventions in a manner that allowed Caleb to make successful gains.  A year later, July 4, 2006, he experienced his first seizure. Caleb had been on every antiepileptic medication I can think of, all at the top titration levels, without ceasing of his seizure activity.  He also had a Vegas Nerve Stimulator placed in 2008.  We also tried the Ketogenic Diet both orally and with a G-tube.  Caleb developed Aplastic Anemia in 2010, and we suspect that an underlying Mitochondrial Dysfunctional Disorder was likely responsible for his many challenging conditions.

I am hopeful that in some way I can help others to navigate the continual battles that consume the lives of those caring for a chronically ill child.  I hope to post links and share information that is relevant to your family, beneficial to your child and that could allow your child to participate in clinical research.


Beth Baker