Web site about Skyler's stuff

Okay, I just want to warn you that Nikki isn't writing this. It's John, I've decided to interject on our family blog. I still haven't decided if I am going to post on here regularly, or post on the blog I started a couple years ago, but didn't keep up on...

A couple of weeks ago Nikki decided to google "VEPTR", which is the name for the device(s) that Skyler has implanted. She found a web site that provides information about the device, and includes a forum for patients and their families to talk, ask questions, and get support from others going through similar things. The web site started back in 2004, but we just found out about it. It has been really neat to see(pictures) and talk to others we have met through our journey, but hadn't talked to in a long time, and to meet some new people. For anyone who may want to know more about the device, what it does and how it helps, click here. I would also like to post some pictures here but I haven't been able to find where we saved them. The only thing I have found is the Power Point presentation I did as part of a research paper at Weber. I don't know how to post it so everyone can view it, does any know how I could? Or how to pull the pictures out of it?

This web site is great, but I don't think we can handle getting on every day. We have been so blessed that Skyler is otherwise pretty healthy, and that he is so tough, we don't have to think about his issues daily. We focus on them right before and after surgery, but not so much the rest of the time that we are constantly overwhelmed by what he has to go through.