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

Archive for the ‘Brisan’ Category

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

Read the rest of this entry »

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.

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!

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!

Read the rest of this entry »

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

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.