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

Archive for the ‘Updates’ Category

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!

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…

Sadly 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????!!!!

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.

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 ]

We haven't wrote for a few weeks. I went out of town for work last week and Mr. Parker on the 8th turned the BIG # 5!

The new year has started off well. Things for work (Mike) have been going well and progressing nicely. Jenn has started her master classes for school. I know she is so excited (minus the homework). Still trying to find suitable insurance but the price tag is very scary. It is well more than our mortgage yet we know we have to make a decision as soon as possible.

Brisan has been doing much better but he did develop a rash around his port-a-cath this week which caused us not to be able to access his port for their DDVAP infusions this week. On that note…looks like they have made arrangements to keep the supply of the drug to us :). Thank you for your prayers! The rash is essentially a yeast infection. You don't want to risk injecting that into the bloodstream because of the risk of all kinds of non fun stuff for him. We are applying topical and an oral medication to get through it. Brisan is a funny boy…. cute as well. He doesn't like to take a nap and we are glad he is being  himself since we've got a hold on that previous eye infection.

Mr. Parker… oh Parker! We should be getting his new wheelchair anytime (like six months later). It is identical to Brisan's but his will be blue. Still issues with bleeding but they are much more controlled. Now that doesn't mean we can tame him during the times we need to get the bleeding to stop :(. He has been enjoying school but you can clearly see his struggles walking and transitioning to different services. End of last week I went up stairs to check on them and he was stuck on the floor in between his bathroom door and the hallway.   He doesn't know how to compensate to get up since he couldn't lean forward to gain leverage to be able to do so. Hard to imagine that 5 years ago we were blessed to have him!

Duncan's 3rd birthday is upcoming on the 28th this month! This boy is something else…oh wait, maybe normal for the most part? He never ceases to amaze us. One day I came down from upstairs and he said “Hi Dad, whats up?”. LOL We've been working on potty training with him. I think he owns more underwear than all females combined on our block. It's like he needs to make a fashion statement!

Duncan was evaluated for potentially going into a pre-k class like Parker but the school district is saying he isn't smart enough to be a peer model yet not “dumb” enough to be apart of the program. (No that wasn't there exact words). We felt he should qualify based upon other areas. He especially has two older brothers that are poor models for him to interact with. We would like to get him around other kids his age as much as possible. It would be nice if we didn't have to work to be around him all day and just have a blast with them all!

Thank you again for everything!

[cincopa AwAAEbaOqDwD]

Wow, it's 2011 already. Seems like we just were starting 2010 and feeling funny about writing “10” on the end of our dates. ha

Christmas was incredible this year and we have so many things to be thankful for! Brisan & Parker started school on the 4th. It feels very nice to be back into a routine of some sorts. I can tell they are happy to. We have some new medications to try this month which is always fun. I think they are walking experiment labs…

Duncan still is being a cute little boy. He walked up to Jennifer last night and hugged her saying “your best mommy'! Ahhhhhh We've been potty training him and he is making progress. Sometimes he would rather hold it. He's getting pretty close to the world record I think… JK.

For our non profit Niemann-Pick Children's Fund, we have some lofty goals this year. We also have some projects to help raise more awareness. No matter what, this all benefits everyone affected with Niemann-Pick Type C. So I hope others in our disease community and other groups realize that.

Thank you for a wonderful 2010 in praying, loving, and keeping us in your thoughts. We're humbled each and every day for the support you truly provide for us!