Fun in the sun

Posting this sweet pic of Kyla girl for all our friends who see and deal with CMS on a regular basis. You probably know this look. She was having such a great time but so weak. Kyla's right eye gets extremely exotropic, turning out, when she is tired. That eye lid also droops and she has a hard time holding her eyes open in the sun. Seems that as she gets older she is able to pace herself in a way that she can regulate the weakness a little better. She would sit or swing when she got too tired to slide, run, or climb. Again, I think the heat plays a major role in the fatigue with our kiddos. Seems to tax their little systems more so than others.

Here is a pic of little sis, Laura! She also had a great time with friends this 4th of July weekend!