Diagnosis

So, two weeks ago we went and saw the geneticist for our follow up appointment. Deep down I knew what she was going to say. I had prepared myself for it. But after we left and on the way home it hit me. My son was just diagnosed with Coffin-Lowry Syndrome. According to everything I have read he will be severely retarded. I was numb for a day or two and then I contacted the CLS parent support group and introduced myself and Andrew to the creator of the group. After a few e-mail back and forth she thinks that he was miss-diagnosed. She said that yes he has many of the features and attributes of the syndrome he doesn't have the "key" ones.  I am trying not to get my hopes up too much that she is right. We are raised to trust and believe out doctors, but she has a son with CLS and had been helping other families for YEARS and knows quit a bit about it. I am so confused. I love Andrew no matter what the diagnosis is.  He is my baby boy. 

A little update.

Andrew is doing REALLY good. His therapies are going great. He has improved tons in his motor skills. He is tolerating his feeding therapy. 

We do go and see the Geneticist next week on the 19th. hopefully she will have something for us, but i am not holding my breath. She did say a lot of time they will NEVER have an answer.

Here is a picture of my smiley boy. Enjoy!