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

Archive for February, 2011

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.

Parker At KCI Airport

Can you believe it is mid February already? About 3 weeks ago Parker received his new chair and he seems to really like it. I say me and Jennifer like it to ! 🙂 He has been having issues with his balance because of the cataplexy. When we let me out of his chair he starts to giggle then it is “man down”. That has been our little joke in the house if him or Brisan falls down. Not that them falling down is funny because it is some serious business. They get hurt, break noses, and just look like they got in a bad bar fight.

It is hard to see these kind of things because it means Niemann-Pick Type C (NPC) is really doing it's dirty business. When you first see the boys you kinda of think they look “OK”. Then you interactive with them and it is all apparent. We contemplate what it would be like if they were just more typical kids their age. What would they say, do, and their activities. What would their voice really sound like? They are very sweet and we do know their voice but it is so few times we get to hear it more everyday.

We are very thankful for every single person that comes to our website, donates, and especially lifts our family up to the Lord. It is hard to stay focused when your pulled in so many directions to keep the Lord the main priority. I mean giving him every single piece of your life. In retrospect if this was all meant to be easy with or without this disease in our life, would we really develop the appreciation for his grace? Would we develop the since of gratitude that his blessings provide? It is about continuing forward and being thankful in every little way. Thank you!

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

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!