How it all came to be...

On December 14 2005 our son Ethan was born 9 weeks early. After 3 weeks in the NICU (in Japan), the non-English speaking resident handed us a piece of paper, complete with a sympathetic smile. On that piece of paper (now saved in his baby box) the doctor had written PVL. He said "go look computer." And we did. Our son had brain damage.
After kidney failure, near heart failure and a slight delay because big brother Tristan had pneumonia, Ethan finally came home at the end of January.
Now back in the States, in July 2006 Ethan was diagnosed with Infantile Spasms - a rare and catastrophic form of epilepsy. Since that day we have had barely any time free of seizures, therapy, tests or some kind of medication.
At the same time Ethan was diagnosed with cerebral palsy, cortical vision impairment and developmental delays.
That was 5 years ago. Since then we've had a g-tube and a baclofen pump placed. He also has a new diagnosis of Lennox Gastaut Syndrome. He battles every day and every night and I couldn't be prouder of him. He greets me every morning with a terrific smile (sometimes the only one of the day), and it's a great way to start the day. He is true blessing.
This blog is the story about Ethan and his family. Thoroughly boring to some, but I hope to give just a little insight into our life with Ethan.
No posts.
No posts.
Subscribe to: Comments (Atom)