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

Archive for the ‘Updates’ Category

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.

One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!

The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!

Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.

Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.

Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.

This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!

Hug your family, love your spouse, and say thank you to the Lord!

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.

Mr. Parker turned 6 on Sunday January 8^th! We are very proud of our little man! For the last 3 years I have been out of town for work and haven’t physically been here to wish him Happy Birthday! Every year is so special to us!

Saturday the14th we are having a “Beach Party” theme at our house for Parker and Duncan. His birthday is January 28^th, so he has to share his together with everyone. I am sure as he gets older he may prefer to have his own shindig.

Last Saturday Brisan decided it would be cool to visit the ER again. I left that Saturday for Las Vegas but the poor kid had not went to sleep the previous evening. That is literally no joke. I think he was preparing for college or some stuff…

He went into the ER for what they discovered was ileus. First time for everything hey? Just a lot of discomfort but we think it he is on the amends.

 “Ileus (adynamic or paralytic ileus) is a type of bowel obstruction that occurs when the intestines stop moving normally even though there is nothing blocking them. This prevents the digestion of food and the movement of waste out of the body.” [WebMD]

Next week Jennifer will graduate with her BS in Applied Behavioral Analysis!

Merry Christmas everyone! We hope that you and your family experienced the peace of the day that Christmas brings!

Our Christmas was very good and it was relaxing. We wanted to share Duncan being funny and Brisan having a Dystonia episode. His episodes are much smaller than what Parker has. It was just a fluke I was able to get it on camera as we were not anticipating that happening. Dystonia is one of many side affects of having Niemann-Pick Type C disease.

Learn more about Dystonia.

Brisan's Dystonia

Duncan's Holy Cow Moment

A tad bit behind on getting this posted up but wanted to share the link to the article on the 2nd half of the story the Grain Valley Pointe Newspaper written by Chris Fischer.

We have been very much appreciative of them taking time to share with the public at large about Niemann-Pick Type C disease. It helps spread the word!

Read More Here: http://go-tiny.com/StultsFamily2