Archive for the ‘Duncan’ Category

Kickball And Fishing

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

Parker Going To First Base Read the rest of this entry »

We Wonder What You’re Thinking

Brisan-Daddy-2-22-12

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.

Duncan Feeding Brisan 2-23

Birthday Video For Parker & Duncan

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.

Family Photos and Updates

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!
Stults Family 2011
Read the rest of this entry »

A Month In Review

It's been about a month since we last updated the world as we know it. For our 501(c)3, the Niemann-Pick Children's Fund, we have been busy trying to orchestrate our Vegas Casino Night on November 11, 2011 at the Hilliard Art Gallery in the Crossroads district of down town Kansas City, MO. Challenging at times because we are already fighting an uphill battle with a disease that no one particularly knows about. It could be better if the boys had cancer or something because more people would understand much faster. When people ask, it is hard not to give a slightly longer answer to “what is it?”. I know people close to us have a slight difficulty answering that question because they aren't as versed in the subject as me and Jennifer. That is quite OK. It isn't something we should necessarily be experts in. You know? We are thankful for those of you that show us support.

We have a special quest attending our Vegas Casino Night. Matthew Lesko will be in town. Here is the press release that Evans Media Group typed up: http://pressreleases.kcstar.com/?q=node/69623

Matthew LeskoWe are still hoping to sell a good portion of tickets this week. Also challenging is in planning for catering and the beverage area when most folks are choosing to wait at the last minute or even at the door. Now that isn't being negative because I understand. So we are attempting to move forward and do the best facilitating the event. You can purchase your ticket here: http://www.NPCFund.org/VegasNight.

 

The Dudes

Brisan has been back to school for about a month now after his August debacle with this health. He has been doing much better. We had an incident about 3 weeks ago where one of our nurse's was allowing Brisan to walk around  and he somehow fell and fractured his pelvis! We have been trying to keep him off of it as much as possible. I think he may be OK but Jennifer was gone and I was upstairs working when I heard the nurse calling for me. Either way I was upset at the situation because it shouldn't have happend. I remember when he broke his leg back in 07'… that was a huge turning point and set back for Brisan.

Parker has continually been having his seizures but doing good. It seems like he is quietly slipping away because he doesn't have the crazy health things come up like Brisan does. Still giving those little smiles and being “mr. stinky”. He doesn't walk around very well. At home we don't allow him to try to walk around much. About a month ago I had him stand up and he got a big smile while I was holding his left arm…he dropped like a crumbling tower without any notice. Just can't have that be happening, you know? At school they both get physical therapy and Parker gets it once a week at Children's Mercy Hospital.

Duncan is a joy. He seems to display being very intelligent and smart. He picks up on things quickly. He still does have some slight challenges but nothing compared to Brisan and Parker. We'll take it! Duncan is very imaginative and is loving his Transformers. He was Optimus Prime for halloween.

Duncan and Mike Halloween 2011

Gavin Lopez

Our dear friends Kristen and Fernando Lopez of Little Elm, TX lost their little champ Gavin to Niemann-Pick Type C disease on October 30, 2011 around 9am. Jennifer went down this past week to lend her support and love to help them out. Although it is really a preview into our future, they became good friends and it was the right thing to do to show support. It just happen to work out for us to do so. Please also say a pray for their family that they find comfort with their loss.

We lost 3 precious souls this past 1.5 weeks to Niemann-Pick. http://nnpdf.org/aboutus_14.html

First Day Of School For Brisan, Parker, and Duncan

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

Brisan and Parker waiting on bus 2011

Read the rest of this entry »

Categories
Archives