Archive for May, 2012
Just a quick update on what's been going on over here in our household. A few weeks ago we finally started with a new home health care agency for our nursing situation for Brisan and Parker. So far… so good. It is huge to us that we have this type of help. Unfortunately the process of acquiring a new nurse and finding that right person is beyond a full time job. Thus far, the agency has taken a customer centric approach which we haven't had that for years… literally. They just epitomize the definition of customer serve. We shall see, right? ha
Brisan and Parker are out of school now until summer school starts here in next month. Duncan is just a blast. He just comes up with the funniest stuff. We talked about just making him a basic website where we can post his “Duncanism's” of the day. LOL
You know.. Niemann-Pick Type C disease (NPC) is such a roller-coaster of a disease… like many rare diseases and others that are more common. Everyone wants to know what the “path” is going to look like. Sadly, we just don't know either and explaining what that “looks like” can be taxing. I know for me personally I will say they are doing “fine” because it saves me from some long winded answer. The dudes surprise us everyday whether that is up or down in their situation.
Thank you to each of you for reading and keeping us in your prayers!