Yesterday I took the kids up to Easton, Pa to visit the Crayola Factory and hang out with some good friends. Madison had a blast hanging out with her boyfriend/buddy Alex, who we first met at DuPont three years ago and who also happens to be fighting Mitochondrial Disease. It was so nice to hang out with his mother and little sister and just be around people who truly understand what it is like watching this horrible disease.
The kids had so much fun, though Gavin fell asleep before we arrived at the Factory and slept for a solid 5 hours -not sure what is up with that. He is doing better today but is still looking very pale. I'm sure he will need more blood again this week. I haven't heard about any of his cultures -- I assume they are still positive. Gavin's Doctor will be back this week so we will see what the game plan is. Please say a prayer for our buddy Alex who is admitted to have his central line replaced.
We love you Alex!