For the past three years, Adam gets a yearly check up to make sure his heart continues to be strong and healthy. Initially he was seen at Vanderbilt in their pediatric genetics clinic. The geneticist and her assistant did a very thorough exam on Adam and found that they could not rule out Marfan Syndrome. He has many skeletal markers for this syndrome. He does not have the serious complications of Marfan Syndrome--Most people with Marfans Syndrome have problems associated with the heart and blood vessels-- so he has not been diagnosed with this.
Although the gene for Marfan syndrome has been found (generally--not in Adam), there is no simple blood test or skin biopsy to make the diagnosis. Last year, the pediatric cardiologist at Children's Hospital told me Adam was fine but that it was a good idea to keep an eye on Adam's heart as a precaution.
You can read more about Marfan Syndrome to the right of my blog...there is a link to The National Marfan Foundation. I have a friend from High School who has Marfans. Her daughter has also been diagnosed. My friend was blessed to have been diagnosed before her life was compromised. She had heart surgery and is doing well today.
To Nana and Papa's House:
After Adam's appointment, we went to my parent's house to have dinner with them and to help my sister, Jennifer, hem a dress she is wearing in a wedding next week. We had a very good time and Mom made a delicious meal. What a treat, I didn't have to cook. Thank you Mom!
Just checking in hoping your TA arrived Friday.
ReplyDeleteHope you hear this week that it's on its way!