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

Posts Tagged ‘Duncan Stults’

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!

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.

Last night, 11-11-11 we held our Vegas Casino Night. The evening was full of different casino games like craps, blackjack, texas hold'em, roulette, and much more. Matthew Lesko was a big hit and everyone wanted a picture with the famous Answer Man!

We held the event at the swanky Hilliard Art Gallery which provided a nice venue for this wonderful evening. The overall turnout was what we expected and the feedback was very positive. This certainly will give us a good building block for future events.

Christina Median of NBC Action news in Kansas City generously gave a portion on her evening to come down to the event. Here is the link for the newscast: Grain Valley family fights to find a cure for rare disease. We sincerely appreciate her and NBC for sharing airtime in helping us spread awareness of the event!

Should have pictures soon.

Thank you to everyone that helped spread the word and equally important, attended our event.

Brisan, Parker, and Duncan started school today! Although last night someone decided to sabotage half of the 46 school buses for the Grain Valley School District that prevented most of the students besides the special needs students to have bus transportation.

Brisan started 1st grade today! Parker started kindergarten and Duncan started as a peer model!

Here are some pictures to share with everyone:

Brisan and Parker waiting on bus 2011

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