May 5, 2015

Today we went to London for a round of appointments with various departments.  Our day began at 9 and we finished just after 4 so it was a long day.  We didn't learn much, Jim has a weak neck and the good news is that there is a brace we will get that will help support his chin.  He is looking forward to using it but we need to order it first.  There doesn't seem to be significant decline in other areas from our appointment in February and that is good news.  He is encouraged to remain active, eat healthy (but not lose weight since weight would include muscle mass), practice coughing, and push himself  to continue normally but not overdo it.  He is also going to try to participate in some research studies if possible.  It may depend on whether he has enough lung capacity.  We feel that the team in London is an excellent group of people and we are well supported.  So life continues and we celebrate every day, sometimes cheerfully and sometimes reluctantly.  We have a God who loves us and knows our needs better than we do.