SeansGranny's Journal

My name is Nettie and I would like to start this journal with a little bit about me and my family. My husband and I met when I was 13 and he was 15. That  was 23 years ago. Here is a pic of us waaaay back then.

We have 4 children. Theea is our oldest she will be 19 in September, Amy just turned 17 this month, George Jr is 8 and William is 6.

Theea is married to my son in law Steve. They have a son named Sean.

Sean was born November 18, 2008. When Sean was a few months old my daughter noticed a patch of skin on Seans side that looked like a rash. She showed the patch to his doctor and she said not to worry if it was still there when he turns 2 they would take a closer look. She mentioned lupis. Which of course worried her instead of making her feel better. Before Seans next checkup my daughter noticed that instead of going away there seemed to be more. My daughter brought this to the doctors attention. The dr sent his to a dermatologist. On June 2, 2009 the derm looked at it and mentioned Tuberous Sclerosis and said they wanted to do a biopsy to rule it out. They didn't explain what TSC was. What we read about it was terrifying. On July 7th they did the biopsy. Still they did not give any information. On July 27 we recieved the news. Sean has Tuberous Sclerosis. On August 11 Sean had his first EEG. The  EEG was normal but the neurologist wanted to do another one because the first one was not sleep deprived. Yesterday Aug 25 they did a sleep deprived EEG. We are currently awaiting the results. 

Sean is a very happy baby. He show no signs of delay. He has been making some movements that make us worry about siezure. But we are trying to be optimistic. Right now he has a bit of a cold. I live about 50 miles from him so I don't get to see him as often as I would like(which is every day)Please pray for my little Seany there may be a very rough road ahead of him. Thank you