Posts Tagged ‘Niemann-Pick Type C’

Long Month

It seemed that March was the longest month ever. We have been anxiously waiting on some news but either way it is out of our hands at this point.

Brisan Parker Duncan 4-3-2011

Brisan Parker Duncan 4-3-2011

Jenn has been completing both her bachelor's and master classes simultaneously. This requires a lot of work for her and frankly I have no idea how she is able to write so many papers on subjects I find incredibly dull to say the least. I am very proud of her and I know we both want it to be over with. Some people would ask why is she in school when we have the situation with Brisan and Parker? School started long before we knew about the boys' diagnosis. I told her if she starts then she needs to finish. Having student loans isn't much fun especially if you have no piece of paper to show you created debt for societies purposes.

Tomorrow April 6th we have a school meeting for Parker to talk about what kindergarten will look like for him in August. The talk has been that they will keep Brisan & Parker together which we feel is a great thing. Overall there is no real progress with the goals that we set out for them to do. We hate getting these report cards that we have to sign and return. Just reading them clearly reminds you that the situation is dire. I will say that their teachers try to do a great job of keeping it positive the best way they can and also includes any little thing that might seem to be an improvement.

We've been trying to figure out the right dosage and feed schedule for both boys. Sometimes it seems it works fine then the next moment they are playing out the scene from the Exorcist. Per Kate Brisan's nurse at school he sometimes will eat and other times he will take a few nibbles. We notice the same thing at home. He really doesn't like to do any drinking by mouth much anymore. That has been creating some nice chapped lips and sores in the creases of his lips. Poor Parker just doesn't say much any more. Well actually…nothing. Just looking cute and floppy.

We're hoping we can get a few fundraisers going this year for the NPCF.

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Another Staph Infection?

Brisan at CMH 2-18-11

Brisan at CMH 2-18-11

On Saturday February 19th Brisan returned home from Children's Mercy Hospital. Jenn had taken him in on Wednesday evening with concerns form our carousel & his school nurse along with ours that something was going down. He had puffy cheeks, feet were swelling, and his abdominal area was pretty hard. Back in September, these were similar things that took place. We wanted to be cautious and even more proactive to prevent him from going into distress.

Jenn had asked for them to culture the inside of his g-tube hole but at the given time the consciences was that might not be the problem. Over the next day it did grow and sure enough it was another Staph infection. Along with that he has an upper respiratory infection of some kind going on to.

He is at home resting and appears he will be making a recovery with the antiobotics and game plan they've set fourth for us at home.

*Should be posting Parker & Duncan's birthday pictures soon! Also a news video of our family from a few years back.

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Our Blizzard

Hi all, I know normally I am not the one that blogs but today I am. As I am sitting here in this blizzard watching the snow fall, I am thinking about Brisan and Parker. I often think about what they would be like if NPC was not taking them away from us. Would they be begging me to go outside and play in the snow like Duncan? Would they be watching the TV to see if school is canceled tomorrow? While Duncan is excited about the snow and spending time with Mommy and Daddy, Brisan and Parker really have no idea. But that is just our reality. They don’t even know what snow is anymore and don’t say Mommy or Daddy and have not for a long time.

Brisan and Parker Laughing

Brisan and Parker Laughing

I find myself having a hard time dealing with this “reality”. I know in my head that everything happens for a bigger picture but when you are in the forest it is hard to see anything but the tree in front of you. But when you take a step back that is when you can see the whole forest and the bigger picture. I was once told that there is light at the end of the tunnel and it is not a train.

As I have been talking with some friends on facebook, I am slowly starting to learn thatI have to ask for help when I need help, I have to allow myself to feel these feelings and I have to rely on those that have sadly gone before me. None of those are easy for me to do. I am a very planned and organizing person. But let’s face it, Niemann-Pick Type C has a plan of its own and is not organized like I wish it was.

On a good note, we have a new member of the family, Jenna. Jenna is our new personal health aid that is working with the boys. I have to say that she is great with the boys and she loves them as her own. That is exactly what we need. She is always asking us questions, wanting to learn more and more about them, their story and NPC. More that I can say for 98% of the ones in the past.

While I am very sad at our crazy daily life, it for some reason makes me want to fight even harder. This is where we need help. We know that we can’t fight this battle alone. We just can’t. We need your help, awareness is key. If we can save one other family from having to even know what NPC looks like then I would feel successful. I have heard several times lately that I am NOT Super Woman and Mike is not SuperMan. (That also doesn't mean I wont try though.) There has to be some way to make Brisan and Parker’s life better than it is already and also find a cure/ treatment for this monster. That being said, I think we may do some finger painting today with all three boys.

I’ll let you know how it goes.

Last note, “The King has one more move!” I don’t know what it is but I have to trust in him and know that it is all for His glory and Brisan and Parker will and are making adifference in this fight against NPC!

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Parker having Gelastic Cataplexy

Parker lately has been having gelastic cataplexy attacks very frequently. We've had both Brisan & Parker on medicine to help this but the last 3-4 weeks Parker seems to be reacting differently to the changes Niemann-Pick Type C is placing on his body. This is all to be expected.

Parker laughing is a joy to watch because he is so innocent with his sweet soul. The bad part is when he does start this laughing “fit”, it creates a loss of muscle control & tone. He essentially becomes a noodle and falls. Saturday (1/29) he was out of his chair getting a diaper change and he stood up for a few moments and then accidentally fell into the corner of the wall gashing his head open. We've been trying to get video of him trying to walk and when he has these cataplexy episodes. Hard to plan for those things…

Parker in his new wheelchairSadly we have to keep him and Brisan more in their chair although we hate doing this. The other challenge is we can't be a 100% of the time hovering over both of them to keep them safe. It just isn't possible and especially with a little squirrelly three year old running around.

Starting on the next school day (depending on when that will be with all the snow expected tonight), we will be sending Parker to school with his wheelchair just like Brisan. Now that doesn't mean he can't get out and roam around but it will provide a safe haven for when he is unstable. This has worked well for Brisan at school. It just takes one good fall to do some serious damage. You and I don't think much about this because we typically have enough control to protect ourselves on a fall. It would be like free falling out of the sky and hitting the ground. There is nothing you can do to soften or protect yourself from the impact.

Last week Parker fractured his nose (1/22) because he fell. That all happened within a matter of minutes.

Here is a video we shot on Sunday (1/30) showing Parker laughing. He was going really good earlier before I grabbed the video camera to record. You'll notice he has a couple good head drops along with the vertical gaze palsy (issues with moving the eyes up/down/side to side. the “awkward” eye movements.) Plus the poor kid needs a hair cut????!!!!


[ View on Youtube: http://www.youtube.com/watch?v=M5gEbXY7iqI&hd=1 ]

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Woman Lends Hand In Tragedy | Stults Family

Last July 2010, my parents (Mike) helped organize a fundraiser for Brisan & Parker. During that time through mutual friends they were introduced to Hazel Kinder who lives in Columbia, MO. That is about 1-1.15 hrs from Kansas City. During the late 80's through the late 90's she lost 3 of her son's to Niemann-Pick Type C disease.

I can't imagine going through this whole situation during that time when the internet was just getting started and networking to find support with other families. We are thankful that she wanted to be apart of our story and journey.

KOMU.com out of Columbia, MO did a small story on the event.


[ View on Youtube: http://www.youtube.com/watch?v=NBhjENfOSVA ]

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Happy Birthday Parker & Duncan

Happy birthday to Parker & Duncan! Parker turned five this month and Duncan turned the big three!

Here is a video from their party. I was going to say short video but it is much longer :).

Thank you so much to all that came out even with all the snow! They both had a great time. Also thank you to Lee & Julie Bailes for taking pictures (will update this post as soon as we have them uploaded to get on here).

[ View on Youtube: http://www.youtube.com/watch?v=_hGZCnfvFsU&hd=1 ]

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