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

Archive for the ‘Duncan’ Category

3 years ago today Parker you were called Home to be with your big bro and partner in crime, Brisan. This is such an intense month with celebrating your birthday, your Homecoming, and then laying you to rest. It seems just like yesterday. 🙁

I remember back in 2009 when we went to Florida for our Make-a-Wish trip for Brisan and you…. you guys played on Daytona Beach! You enjoyed it so much with sand in your mouth and all over your face! Brisan decided to do the smart thing and fall asleep in the chair in the shade. 🙂 We just couldn't fathom how precious the memories would be during this time. We Love You!

You played with so much “joy” and your heart was so full.

2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”

John 14:2-4 NIV

The boys at the start of a bath in July 2010. Parker was being a stinker with “Heyyyyyy”, Duncan being cute as a button and Brisan doing his “thang” looking gangsta with the Palm Tree hanging out of his mouth. Parker was so full of “personality” as they all 3 were. It was such an honor to be their earthly parents! Miss you guys! There are no words to describe the void that this has put into our hearts & lives forever.

Mom & Dad miss you.

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It's been awhile everyone! It's been a crazy last few months. We've welcomed a few little ones into our home through foster care, one has left, I've started a new position with a new company, and Jennifer has been busy with her crafts & bakery. The past 2 weeks I have been out of town so kudos to Jennifer, friends, and family who stepped up out of their kindness to help accomodate her while I was unable to chip in with everyday life around the Stults household.

The boys have been doing ok. Still dealing with seizures and trying to keep Brisan as healthy as possible. He's been on that line of either getting really sick or just being real “junky” all the time. We have him on antibiotics to try to help starve off any pneumonia, which is the biggest concern for either one of them since they are so weak already.

Duncan is doing good. He was very sad when little “B” (girl) left us last week. They moved her to a kinship.  Duncan has really been into playing the ipad game “mindcraft” where he get's to build things and etc. We've had to try to “monitor” his use a bit more.

We have more but just wanted to get something posted up on the site. Thank you guys again for all your prayers!

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!

Duncan decided he needed to call the police because I wouldn't go get his “bullet” from behind the couch. Take a listen below…

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.

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!