12 Days and Counting

Just over a week till I catch a plane to Philadelphia. It still feels like I'm living in a fantasy but I'm committed now (and so is my credit card).

Hello dear blog readers. I'm a parent of a 10 year old boy with Protein Losing Enteropathy (PLE) following the Fontan operation. I can't explain what all that means in my first post but it's bound to come up again later on given the blog title.

I've managed to get a small grant and some money from Parents and In-laws to travel to USA  to meet expert researchers and clinicians to talk about the future of research and care in this disease. I've had the money for the best part of a year but the trip has really only come together in the last month or so.

I'm starting this blog to record what happens on the trip, partly as it's going to be cheaper than mobile phone calls home and partly to see what happens.