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I am Elliott and Robbie's mother. I started this blog as a way to help me deal and hopefully others deal with genetic disorders. My oldest son, Elliott, has recently been diagnosed with Floating Harbor Syndrome, Microchephaly, and potentially other medical conditions that are currently being tested for. My youngest son, Robbie, potentially has Floating Harbor Syndrome. We are awaiting further testing. So I decided that there must be other people out there that have FHS or other genetic disorders. In order to reach those people and to offer safe place to discuss current issues with family, marriage, and/or medical concerns I decided to start this blog. I hope that wh0mever reads this becomes enlightened and educated in the world of genetic disorders. It is a true test of human nature in regards to how they treat, handle, and understand people who are different.

Elliott's 1st grade picture

Elliott's 1st grade picture
"Cheese"

Elliott's birthday

Elliott's birthday
Day 2..slowly but surely I'm getting better!

Brotherly Love

Brotherly Love
I love you!

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Tuesday, July 5, 2011

It's official....

So Dr. Blazo said it's official, Elliott has Floating Harbor Syndrome.  She is now trying to help us figure out what is the best way we can help Elliott become a productive member of society as he matures into adulthood.  Right now, just being a kid and giving him experiences will help but he will need additional therapies.
Robbie is not progressing in his speech development and I am worried about him.  He is using sign language but only when he wants to...I don't know how I can encourage him to use it more.  I think I am going to have to go to the school for the deaf and ask for some help.
Sometimes, I feel that I really need someone to support me in all of this. Emotionally and physically but I know that is just too much to ask for right now.  I keep taking it a day at a time and I make sure that I take a deep breath when I start feeling overwhelmed or I have a night where I just curl up and have a good cry.  I need to remind myself that I need to take care of me and then in turn I can take care of my boys better.
Please keep my family in your prayers, we can never have too many!