Brisan and Parker Stults | Living with Niemann-Pick Type C

Brisan 2009

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!

Meet Pete. Pete came into our lives back in January 2009 while we were in DC at the National Institutes of Health. Pete the dog is Brisan’s buddy. He loves his Pete! I mean.. look at how well loved he is? He always snuggles with him, he poops all over him, Pete catches his throw up… he is truly “man’s best friend”.

The funnier part is Pete was given to Parker since we were there over his birthday. Brisan quickly latched on and never looked back!

Here is a video that Brisan was being really cute! He looked at Pete and shook him a bit saying “wake up pete”. ha (Look how fluffy he is?)

So you thought this was going to be a debbie downer huh?

That phrase of the title is a little joke I like to say because every morning…like literally, we change the most incredible displays of “you know what” by Brisan and Parker. Oh yes… we’re talking about shit! ha We feel so bad for them because with all the medications and all it just doesn’t matter what we give them to help thicken things up. Since they can not talk or really do much for themselves, it has to be a horrible feeling just sitting there waiting for someone to change and clean them up.

We do all that we can to stay on top of their needs but can’t physically always prevent it from happening. It typically happens in the morning hours and either before I go to the gym or when I come back home, let the changing diaper wars begin! The worse part is you get them all “suited up” for school and then they decide to give a present that keeps on giving! HA

It’s ok. Don’t get all bent out of shape because I chose to post this. Just wanted to share my sense of humor.