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

Posts Tagged ‘Brisan Stults’

I was able to get the “dudes” on the camera last night. Of course they had no interest in what I was doing because one of their favorite cartoons was on, The Penguins of Madagascar! Parker started having some bleeding while he was at grandma Carnes's house this week. Yesterday ARJ Infusions Services came out and did another infusion of DDVAP for both of them. They also will both get another infusion on Monday, their regular scheduled day.

It appears unofficially that they will be going to twice a week infusions. That is our hunch at least. Below is a video of the guys after dinner: (if your unable to view via your email update, click here: http://www.youtube.com/watch?v=zoWaslyYsdk)

In the video as you can obviously see ( ha ha) they are both getting a feed through their GT's. Brisan will surprise us every now and then and eat a whole bunch but we need to supplement his calories. Parker loves to eat as well but we want to make sure they have a full belly before they go to bed. Hopefully that will help them sleep.

You also will notice how Brisan really doesn't like to look down at his food (well cookie!). You have to love the vertical gaze palsy!  Either way we love the little guys! Thank you to all for everything. There will never be an action or material item that could say thank you for the prayers, support, and love you've given our family.

Jennifer stayed the night with Brisan while I went home to gather the heard (dogs). Looks like his incisions started bleeding sometime this morning. They applied some pressure bandages to them.

This morning they were not for sure they were going to allow us to go home today but they just came in and said we could leave. Well of course after taking the pressure bandages off there still was some bleeding. I think we will get to go home tonight. They feel fine since we are local that if an issue arises that we could come back ( I had to giggle at that one!)

Here he is very happy 🙂

So far so good for today for Mr. Brisan. Pretty similar story to Parker’s surgery but today went very smooth per Dr. St. Peter. Brisan had his port-a-cath put in just like Parker did exactly two weeks ago today (April 7, 2010).

The morning started off well. He was such a trooper when they had to stick him for his IV to give him his DDVAP & blood platelets.

Brisan is currently resting and has really been asleep the whole time since post operation recovery. He had a small nose bleed after surgery when one of the nurses went to suction his nose out with all that snot! He moved and it got him!

Thank you for all your prayers and thoughts.  We are hoping that this makes the anxiety and a piece of our life slightly better with the infusions.

Easter was a pretty good day. Me and Jennifer went to church because we were apart of the 11 am service. The message was on Hope. At the beginning of the sermon they had put a picture up of us while one of the ladies from the drama team acted out our monologue about our story. She did a wonderful job and it was surreal to be hearing our story. I hope that it was able to make an impact.

The boys were at Gma's & Gpa's house while we attended church. Typically we go Saturday evening. We had a good lunch followed by hunting for the wabbit! Below is a video from the Easter Egg hunt we had in their back yard. The boys did a pretty good job “wondering” around! HA I think they had fun.

(In case you can't view this video on your email version: http://www.youtube.com/watch?v=CrhfcmcCEWQ)

Today I took Brisan to his Pre Admissions Testing appointment. I was pleased to see that all of the kinks had been worked out from Parker’s surgery last week. While we were there Brisan was talking a lot. Over about the past month Brisan has really not been talking unless he is mad about the TV or if he wants a cookie. So it was really good to see.

Speaking of Parker. Parker is doing well. He is wanting to move around more and more everyday. The only problem is that he does still have sutures in his stomach and he is still really sore. Try explaining that to Parker. He does not understand that he can not run around and fall on his port. We do have some concerns however about how he is walking. He is dragging his feet and turning both of them out really bad. We will see about more PT in the next few weeks if it does not get better.

Another big thing is we are trying to get the boys a Home Health nurse to come out a couple times a week for both Brisan and Parker. That would also open a bunch of doors for us to get the boys home OT and PT. Having that at home will also help us with the things that we are having major issues with, the stairs, feeding, bathing, teeth brushing, falling, speech, aggression just to mention a few. The more the help we can get to keep with going the better in our opinion.

How many times have you been looking for something at your house but you accidentally find something you previously were missing? Wouldn’t it be a shame if the prize you were seeking was within reach but you discounted that it could be that easy? What if understanding Niemann-Pick Type C disease opened up the door to help millions of Americans with other disorders involving cholesterol? Of course nothing in life is easy nor will it always be within reach. With being human comes the tendency to make oversights.

It has been almost 13 years in July 2010 that the NPC1 gene, on Chromosome 18 for Niemann-Pick Type C was shared with the world on its discovery. This was a huge step and monumental discovery with associating cholesterol with a certain gene/chromosome at that time. To arrive at this point, it took decades of work which shed an abundant light into how a cell metabolizes cholesterol. In short, Niemann-Pick Type C causes progressive deterioration of the nervous system by blocking the movement of cholesterol within cells.

From a press release dated July 10, 1997 from Bethesda, MD:

“This discovery is an excellent example of how research on rare brain disorders often pays off in other ways,” says Zach W. Hall, Ph.D., Director of the National Institute of Neurological Disorders and Stroke (NINDS). “By identifying this gene, we not only take a crucial step forward in understanding this devastating disorder, but also gain insights into problems that affect every one of us.”

In 2001, cardiovascular disease was responsible for more than 39 percent of all deaths in the United States (American Heart Association: Heart Disease and Stroke Statistics 2004). Atherosclerosis is a disease where plaque builds up in your arteries. We all know those aren’t important to our lively hood at all. OK, just joking but plaque is made up of fat, calcium, cholesterol, and other substances found in our blood that over time builds up but hardens in the passage ways of our arteries. Imagine if you’re driving through a two way tunnel but one side is now closed off?  It would be kind of hard to get through to the other side in a timely and relaxing manor with additional objects in your way? Just like that situation, this affects how we get our blood to important areas in our bodies. With millions of people dying each year, this is a huge number of people. What if Niemann-Pick Type C could provide some insight?

Other diseases such as Adult onset Alzheimer’s, Stroke, Cystic Fibrosis, Duchenne Muscular Dystrophy, and even HIV-Aids will benefit from the research into Niemann-Pick Type C. Did you know that children can experience dementia to? Crazy to imagine because most of us think that only our elderly family members get that! With the combination of deaths due to these diseases, could you imagine if we had a more collaborative research environment? Unfortunately big companies aren’t going to sacrifice revenue opportunities to help a blip on the radar screen but they will invest if they see it helping thousands of people; this means a return on their investment. This reality is sad but true.

Rare diseases OUR important to you, me, and everyone we know. Each of us has a Chromosome 18 that is vital to us being a living human being.  I encourage you to help out in some way. That could be donating to several charities that fund research for NPC like the National Niemann Pick Disease Foundation, Ara Parseghian Medical Research Foundation, Hide and Seek Foundation or the Niemann-Pick Children's Fund. That could be becoming and advocate in lobbying our government for better health care. It could be you just passing the word and spreading awareness.

We all are in this together and have been affected in some way by one of the diseases mentioned in this post. One person can make a difference in the world and that person could be you.

Additional Resources:

• http://www.lef.org/protocols/heart_circulatory/coronary_artery_disease_atherosclerosis_01.htm
• http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_fatal_childhood_niemannpicktypec_071097.htm
• http://www.strokecenter.org/patients/stats.htm
• http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_fatal_childhood_niemannpicktypec_071097.htm
• http://www.cdc.gov/nchs/FASTATS/deaths.htm

*All pictures belong to their respective parties.