Wednesday, April 20, 2011

Pointless Story Part I

I feel like telling a story and like all of my stories it is told through my tired eyes, my own experiences, and my own perceptions. Jacob has always been in God's hands. Hopefully, I have been too.

I created this blog, originally titled "The Jacob Fund", as an informational website for a benefit held in December 2009 to raise money for Jacob's Constraint Therapy in February 2010. I documented his daily progress in the program to share with everyone who supported our family. The blog was intended to be hopeful. I did not intend to interject my own feelings. However, during the Constraint Therapy, Jacob began to show increasing signs of seizure activity and I was scared. I was scared because Jacob continued to have seizures after his Infantile Spasms were resolved in June 2009.

The blog was not intended to be about epilepsy and as such most of Jacob's seizures are not documented here. This I regret. I did not take videos of Jacob's Infantile Spasms because they came on so fast and within a few days he was diagnosed and admitted to the hospital. By the time we were discharged, I don't remember if we were still seeing the spasms. I do remember our first follow-up EEG two weeks later. It was still showing Infantile Spasms but it was improved from the first EEG. And two weeks after that, the EEG pattern had resolved.

I have dozens of videos from June 2009 until his surgery in December 2010. I posted one. Jacob's EEG in February 2010, during the Constraint Therapy, convinced his neurologist that he was having seizures when my video did not. The EEG report stated "Infantile Spasms imminent". To read those words... difficult to process, reality is lost. The surgical consult became my reality.

My coping strategy was to stay up late and read and I came across a number of blogs that mentioned Detroit and a Dr. C. I read an article by Dr. C and decided to email him about Jacob. He graciously offered to review Jacob's medical records so I sent them and within a few weeks his assistant called to schedule an appointment. We also had an appointment in Boston. My thinking was that in the event that Boston rejected Jacob, we would go to Detroit. I had never been resigned to medicating Jacob for the rest of his life.

My tired eyes are "wrinkly" as Matthew says when he is sleepy so this seemingly pointless story... to be continued...

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