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

Archive for the ‘Parker’ Category

4 years ago today, we were summoned by an out of the blue phone call from the doctor asking us to come into see her. Of course we knew that wasn't good news considering we had been waiting over 10 weeks for either a “yea” or “ney” for Niemann-Pick Type C disease.

Watching the Olympics is interesting because at that time 4 years ago, the Beijing Summer Olympics were having their opening ceremonies while we received the news. That day was really like watching a movie. It was very surreal like and any parent with children of a rare disease potentially would describe that day they learned of the diagnosis of being of similar feeling.

Isn't life funny how we have a black and white definition most of the time but we complicate it to add different shades of grey? It is easy to say that we will take the higher road and be nothing but positive and encouraging. All though this is very inspirational and true, you and I are still human. We have feelings… we have emotions. When you start to get close to others in your disease community and the disease claims their life, you seem to be hit with bit more of a reality that your future will look the same. Others may not view it in this manner and everyone is going to deal with it differently. We as parents can offer advice until the cows come home but sometimes that isn't the answer. For us, we fail every day to make sure the Lord is in control and seek his guidance first.

Thank you to each and every one of you that has stood by our side, shown support, and lifted us up in prayers. It is because of you that we get through each and every day with the help of others.

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!

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.

Just wanted to share a few pictures with all of you. On Friday, March 16th, Brisan & Parker's whole class went outside to play a little kickball! Parker every Friday morning has physical therapy down at CMH so Jennifer drops him off about mid morning for school. Parker wasn't too excited at times. He never likes anyone touching him much. So funny really… little crab cakes at times. I guess I can't blame him. Jennifer said just watching them out with their class mad her want to cry! Brisan waddled around the bases as well and he was even kill most of the time!

Duncan went to grammy and papa's house Friday and papa took him fishing for the first time! He caught 4 fish and said that the worms were “slimy”. What a funny kid!

Here are the pictures!

KickBall

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Me and Jennifer say all the time that we wonder what Brisan and Parker are thinking? I am sure for them it is like being in a jail cell screaming at that top of your lungs only to find out that they have you in a sound proof room with only a pin hole for people to hear you.

Can you image the picture of someone looking out through your eyes with a reflection back showing you imprisoned behind bars? This isn't to be all sad, just an observation I think we all think about but we don't necessarily tell people.

They are good little troopers. Brisan is still dealing with his Ileus but has been in a fairly good mood. Looking to get him back to school on Monday. Parker has been pretty fair. Duncan has been all over the place! Being sweet at times like below when he told Jenn that he wanted to feed Brisan.

Just a quick video of all of us singing happy birthday to Parker & Duncan back on January 14th, 2012. Just another precious moment we wanted our family and friends to be able to view online if they were unable to attend.