This blog is about our son Michael Jesse and his battle with Lennox Gastaut Syndrome. He is 3 1/2 and was diagnosed at 18 months. We will write about Michael's journey, things we try and all of the celebrations and blessings in his life. April 15, 2010 was his first day without a seizure.
Childhood epileptic encephalopathy (Lennox-Gastaut syndrome [LGS]) is a rare and debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications or therapies, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.
Wednesday, June 16, 2010
Reason for naming blog "Bit by Bit"
Just in case you were wondering, the reason for the blog name is not related to horse bits but for a song that was pre-loaded onto a Digital MP3 Boombox for kids that Susan bought for Michael several years back. The first song pre-loaded was a song called "Bit by Bit" by Hot Buttered Rum and Orange Sherbet (yes this is the band's name). The song was so fitting that while Michael was going through all this I coined the song as Michael's theme song. Susan used the name for the blog as the song still rings true (probably rings true for us all). I was hoping to attach the MP3 here but have been able to figure out how. It is late and I am giving up for now. You can go to the I-tunes Store and search "orange sherbet and hot buttered rum", the Campfire Sing Along album should pop up and "Bit by Bit" is song #5 or you can go to http://www.cdbaby.com/cd/osahbr and this will bring you to the same album under a different site. The actual song is 3:10 but the sample is probably 15 seconds but you will get the flavor. The song is spot on for Michael..... "Bit by bit I'm getting better, little by little I'm moving right along; piece by piece I'm putting it together, learning how to sing my song".
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2 comments:
Anxious to hear the song and lyrics. I just thought it was showing his progress, bit by bit!
I too have a special needs child and have the same player. Was looking up online to see who it was by and stumbled upon your blog...
have to say love the song too!!!
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