Marfan Syndrome Conference

We went to the National Marfan syndrome conference last weekend at the Mayo Clinic in Rochester, MN. It was a great conference with a lot of information. Everyone watched out for each other like a very large family. About 500 people showed up from all over the US and other countries. We came away with more knowledge and knowing we are not alone in trying to figure this out with our kids. We hope to attend the next conference in Houston, TX next July.

Music and the New School Year

I re-posted one of my favorite songs to go with the start of another school year. Like the song, we aren't skilled to understand what God has willed...what God has planned for this school year. I am waiting to see where my classroom is going to be this year. I might have to change locations.



My Savior, My God
by Aaron Shust

Marfan Syndrome

For the last few months, I have read everything I can find on Marfan Syndrome. I really think there would be a market for a book on this topic, since there isn't much out there.

I have found some sites with good information.

Here is one site that has good information on Marfan.
http://www.marfansyndrome.info/index.html

This is the National Marfan website.
http://www.marfan.org/nmf/index.jsp

Eli, Julia, and Robbie

Here is a short video clip of Eli, Julia, and Robbie from Thursday. We visited the zoo, the neighborhood pool, and they played inside too.

Nick's Family

Nick (Ruth's boyfriend) and Nick's mom joined us for Easter today. It was nice to finally meet his mother. :-)