This week (God willing) we will put Devin's G-tube back in..  As those who followed our journey all summer know...  his weight has been unstable since we stopped using his feeding tube back in February.  But his pneumonia's have gone away COMPLETELY!!   Twice this summer we had to post-pone his site closure because of weight loss.  I am NOT completely upset about this.. God works in mysterious ways!!  Although it would have been our final whole closed, our last piece of plastic taken out, and a huge accomplishment based on where we started.  I wasn't really thrilled about giving up a week of his summer to accomplish this.  Summer is by far our healthiest time of year!!  It is the time of year that I love!! Making memories that I will have forever with my three kids!!  To give up a week was not really in my game plan.

The site continues to leak.  Somedays horribly... Somedays not so bad!  But in preparing for school I know this is gong to be a HUGE issue! So we are going to put a tube back in just to plug the whole.  I know some of you are wondering why not close it now!!  We can't get on the OR schedule (in DC) until the end of September (and they want to do it).  It will require 5 days in the hospital and a couple more in DC.... and here is the BIG reason (this is where having a PICU doc and nurse as parents is an issue, LOL)  by the end of September we have started RSV season (a BAD respiratory virus) and (early) Flu season!! To go into the hospital for an elective procure is NOT happening.   So, we will hold off until next May or early June!! YES!! I am insane!! and the transplant center agrees... "yes, you are crazy!  But I guess a good crazy!!"