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Showing posts from April, 2011

I Love To Laugh

I love to laugh Loud and long and clear I love to laugh It's getting worse every year The more I laugh The more I fill with glee And the more the glee The more I'm a merrier me Most of what I've read about Pompe Disease and fatigue relates to respiratory issues.  According to pompe.com, "Most people with Pompe disease eventually experience breathing difficulties. These difficulties may start out mild, and it may take some time before patients or doctors recognize them.  Pompe disease often results in a weakened diaphragm, the large muscle located just below the lungs that plays a crucial role in breathing. A weakened diaphragm makes it hard to breathe deeply and get enough air into the lungs, especially when lying down, ... eventually leading to respiratory insufficiency." 1      Fortunately, our girls have performed well on their PFTs (Pulmonary Function Tests) to date and have even shown improvement in some areas.  However, we have occas

Sunday Papers

You can read it in the Sunday papers, read it in the Sunday papers Just a short update this time around.   As mentioned in my last post, Whats So Funny 'Bout Peace Love and Understanding? , Dr. Lisa Sanders of the New York Times has written an article about Maddie's diagnosis. The article was released in today's New York Times Magazine.  Please check out the link here, New York Times Magazine .  Better yet,   go pick up a fresh copy, a large coffee, and enjoy the read! All for two and two for all! Matt Credit to: Joe Jackson, " Sunday Papers "