Welcome!

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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Wednesday, April 14, 2010

Patience is a virtue in what exactly?

I've been taught that patience is a virtue and for the most part I am an extremely patient person. However, my patience is quickly coming to an end. I waited for over two years...yes that's right two years to see a developmental pediatrician. All he did was review his medical chart, weigh him, took his height, asked him some questions and said "yes, there is a problem." I am referred to a geneticist who in turn tells me that she feels that he has Floating Harbor Syndrome and wants to run a series of tests. I don't have a problem with any of that but what I do have a problem with is that every single test has at least a six month or more waiting list. By the time my husband and I find out exactly what our son has he will be driving!!!! I am just frustrated that the medical community feels that we have all the time in world and that we all are on their time schedule. The longer we wait for these tests, the more behind our son gets with his education! Who were the people that taught those doctors to read, write and do math...TEACHERS! I guarantee that if it was their child they would not be placed on waiting lists...they would have immediate access to care!

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