Posts Tagged ‘Parker’

It’s Always A Shitty Day

So you thought this was going to be a debbie downer huh?

Who Gives A PoopThat 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.

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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 »

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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

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To Look In Your Eyes


One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!

The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!

Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.

Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.

Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.

This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!

Hug your family, love your spouse, and say thank you to the Lord!

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Parker is 6 Years Old!

Parker Stults | November 2011Mr. Parker turned 6 on Sunday January 8th! 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 28th, 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!

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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

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