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

Posts Tagged ‘Brisan’

We wanted to tell everyone Merry Christmas! We have been appreciative of your support, prayers, and love you've shared with us! It is hard to believe we are entering 2013. The boys have been doing O.K. recently. Brisan is officially home bound from school until we look at the circumstances again in the spring. Parker lately has been having a lot of seizures :(. Duncan is a man on a mission with his “barines” (marines) and “army guys”….

Merry Christmas 2012

This year we celebrated Halloween with our small group from church. For Brisan and Parker this was their first year out since 2008. Either someone was sick, in the hospital, or it was way too cold to have the big boys out. Duncan was getting so excited leading up to the day!

Brisan was a Tank!

Brisan Stults – Tank Wheelchair

Parker was Ratatouille and his was a Stove Top Wheelchair! He kept trying to kick it off his tray. HA

Parker as Ratatouille with his Stove Top Wheelchair

Then Duncan was Darth Vadar! His little buddies Seth & Keegan were apart of the “force” as well.

Duncan as Darth Vadar

All this was possible because of Jennifer's hard work and creativity. Overall we had good fellowship and Duncan had so much candy in his “satchel” that he was wobbling. He tapped out because he was pooped!

When me and Jennifer first started dating, she took me to a place her family had been going to for quite some time. The restaurant is a Chinese place called Hunan Gardens in Liberty, Missouri. Frankly, it was the first time that I was pleased to eat that kind of food. Before I had no real interest in eating anything other than “meat & potatoes”.

The owner's and staff were always so friendly. They shared with us the times we would visit including the births of Brisan & Parker. Over the years since we've moved about 35 minutes away, we've not been very much at all although we always say it is our favorite “chinese restaurant”.

Brisan and Parker over the years and shortly after Duncan was born, they loved to chow down on crab rangoons and veggies! Brisan when he was still speaking called them “cacoons”. Parker just hoovered his way through carrots and peas!

Since their diagnosis back in August of 2008, we have been coming less and less. Mainly due to the coordination and all the extra effort it is to pack up wheelchairs and the whole “semi like” approach to going anywhere anymore. We had dropped little Duncan off at grandma's and papa's house so he could have some quality time with them. Afterwards we stopped by because it was close.

That was the first time in probably 2-3 years we had been their with Brisan & Parker. Check out the video below on how they are trying to eat some of their old favorites. Due to Niemann-Pick Type C disease, the affects of it all as you can see are weighing in as they struggle to hold and complete the normal functions of eating that so many of us by default take for granted.

Aren't they so cute? Just want to squeeze em'!

Hi everyone! Been awhile since we updated everyone on how things have been rolling along. A couple months into having our new nursing agency, we've seemed to have found a great fit in our home with Brooklyn and Dana. This past week we've been allowed to have a total of 60 hours a week! We are both very excited about this! It will allow for flexibility in the schedule to be able to do things at “other” times.

Duncan

Duncanism

We created Mr. Duncan Stults his own website: www.Duncanism.me . The goal is to post his “Duncanism's” he gives us everyday! The problem already is… he has so many to choose from! I guess adding another site to the “update” list may not have been a good idea!

Duncan has been growing so much before our eyes. He has finally “standing like a big boy” while going #1. That sure makes our life a bit easier out in public using the restroom. The only problem is if he isn't tall enough to aim it, he may be dangerously close to touching “germ central”. Yuck! Jenn's also been working with him on his letters. He prefers to call them “numbers”. Maybe a future engineer?

Brisan & Parker

Brisan and Parker have been on a two week break from summer school. They continue to loose more of the little things everyday. We don't admit it to people only because we may not be able to see it or maybe we just don't want to think about it. Like Brisan, he has a hard time keeping his balance sitting up now. Always falling to his right/back side. Changing his diaper causes him to have a small dystonia attack mainly because he gets all worked up over us laying him down to do what we've down the almost last 8 years of his life.

Parker…. well… he is quite the stinker! “Stinky McStinkerson” is his current nickname added to the laundry list of alias's he goes by these days. His overall motor skills are very poor. One thing that has been good to see the last few months is that when we have him on the floor, he will raise up on his knees and try to “walk” a couple nubs. Then it is plant your face central onto the floor which is the sucky part for him! On one hand you are excited for him to have that freedom but that freedom is going to cause him a lot of pain because he can not catch his fall. The kid can never sit still. He can rotate 360 degrees by flopping around.

Click here learn more about Niemann-Pick Type C.

Until next time.

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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