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

Meet Pete

Michael Stults — Wed, 04 Apr 2012 23:23:24 +0000

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?)

http://www.youtube.com/watch?v=J6tzfcdf9m0

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It’s Always A Shitty Day

Michael Stults — Tue, 20 Mar 2012 16:15:09 +0000

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.

Kickball And Fishing

Michael Stults — Mon, 19 Mar 2012 00:38:19 +0000

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

Duncan Fishing

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We Wonder What You’re Thinking

Michael Stults — Sat, 25 Feb 2012 00:05:10 +0000

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.

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To Look In Your Eyes

Michael Stults — Tue, 07 Feb 2012 20:17:43 +0000

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!

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Birthday Video For Parker & Duncan

Michael Stults — Fri, 27 Jan 2012 17:28:50 +0000

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.

http://www.youtube.com/watch?v=d2nYsyCcP2Y

Parker is 6 Years Old!

Michael Stults — Sat, 14 Jan 2012 01:47:47 +0000

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!

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Merry Christmas From The Stults Family

Michael Stults — Mon, 26 Dec 2011 20:57:43 +0000

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

http://www.youtube.com/watch?v=DVE2eTj9VfI

Duncan’s Holy Cow Moment

http://www.youtube.com/watch?v=Ircj3oZyyKI

Very Thankful

Family Photos and Updates

Michael Stults — Mon, 12 Dec 2011 03:25:16 +0000

Updated Family Photos

Isn’t Duncan’s face totally historical? He was being a little bugger all night not wanting to take pictures but instead play with Wendy’s son. That is ok though… we were able to get a few good ones in here. Also he doesn’t get that kind of action at home although he has two older brothers. We recently had some new photos taken by our good friend Wendy. She is so kind to do this for us!

Brisan

On Thursday of last week, Brisan had an episode where he started to throw up and his O2 stats dropped. It caused his body to go into a seizure and he became pretty unresponsive. In all the things we have seen thus far out of our “bubbas”, he went so lifeless so quickly. We called an ambulance to take him down to Children’s Mercy Hospital downtown. It didn’t help that the paramedics said his lungs sounded pretty full. Considering all the things we have seen recently in our disease community…this had us on a heightened sense of alert.

Our neurologist told us last week that kids with neurological diseases like Niemann-Pick Type C that their lungs usually what gets them in trouble long term. We certainly agreed with him. Brisan is doing better now. He still has a mean cough/ mucus stuff going on.

Link To Album Here

Our Thanks

We have many things to be thankful for this year. Each and everyone one of you have shown support in different ways. Your prayers are especially appreciated as those alone are what helps us just manage day to day. We are human…we do get sad that our little men aren’t going to have the things in life that all parents dream of seeing out of their children. The realization happens more and more everyday when we have friends in the disease community loose their children, other friends who have children with other related diseases go through their lose, and just looking back at older pictures/ videos of when they had more abilities.

Stults Family – Grain Valley Pointe Story Part 2

Michael Stults — Tue, 06 Dec 2011 20:58:03 +0000

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