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

Archive for the ‘Brisan’ Category

Last week was a very busy week. Brisan and Parker both started physical therapy at Children's Mercy Hospital. It is kinda of funny that they “started” when we went almost two years ago and told us that “they didn't know what they could help us on” and that “oh…Medicaid will pay for these for visits”. HA…that wasn't the case with Medicaid. The good part is they are getting additional therapy. That is what matters most.

Also they met with their new neurologist. They started the boys on a cataplexy drug this week as well which is one pill at night. It should help manage when they lose muscle control and fall. She also consulted with Dr. Marc Patterson on resuming the boys on Zavesca. So that will be started up again very soon! That stuff is pretty expensive (like 190,000 for both of them). It will be interesting when we will have to find new commercial insurance at the end of the year.

On Wednesday August 11th, Brisan and Parker had a minor surgery to remove the granulation tissue around their G-tubes. Starting next Wednesday they both will start school. For Brisan it will be Kindergarten! Big day for the big birthday boy this month. On the 27th he will be 6!  We still can't believe it!

Jennifer's Dad Tim purchased a swing set for the boys. Last Sunday we started putting that monster together! Now we know Brisan and Parker probably aren't going to be able to enjoy it like more traditional kids their age but hopefully they will find something they will enjoy. Duncan probably will! The neighbor girl was telling her mommy that “mommy they are building my swing set”. HA

It has been a few weeks since we last gave an update for everyone. Brisan and Parker seem to be doing better for now. We haven't had any ER trips or anything very special.

Last weekend my mom and step-dad put together a fundraiser for the boys. It went well for the first time they've attempted something of that nature. To us we were thankful and any help is indescribably appreciated.

I did get a few questions if I found work. The answer is yes! I started a few weeks back with a similar company as the one I worked at before in the online marketing space. I can't take credit for this opportunity. It really was God putting it in my lap. I had other interviews but things didn't work out as far as pay or just the overall situation. I am aware that my previous employer isn't too excited for me to have this job but I am fond of living in my home and providing for my family. They certainly didn't consider my family to thoroughly when they eliminated my position. My intentions are pure and nothing in me wants to be detrimental.

Here on August 8, 2010 will mark the two year anniversary that we received the crazy news about the diagnosis of Niemann-Pick Type C. Below you might have heard this recording in the past but it was a few days after his tonsil and adenoids surgery he called me at work and left me a voicemail. The sad part is  he talked pretty well at that point but now he is pretty nonverbal. Now he can still talk but just doesn't choose to say much anymore. If so they are typically one word phrases.

Brisan5-27-08 by MichaelStults

Just a quick video I got of the boys before we gave them a bath. Parker and Duncan love bath time. Brisan would rather go and hide from us! Always glad to see the boys happy when these small things perk them up. As you will see Brisan wasn't too thrilled. He was “hanging out”. (Sorry the video is not on the screen. It just wouldn't budge regardless of what dimensions I inputted!)

View Video on Youtube (if your reading this in an email update)

Last weekend we spent precious time in the ER at Children's Mercy Hospital with both Brisan and Parker. They both had a horrible cough started and on top of it had been running fevers since July 4th. The concern is if they have a high fever that maybe that could be a sign they have a blood infection? Doesn't sound fun and we were told to bring them in without question if a fever developed. This of course is in concern with their port-a-caths.

They kept us over night and allowed us to go home last Sunday. This week they have been doing better and are stable. Whatever they had was some type of virus and now seems to be gone. During this whole time we experienced the first time being asked if we had a DNR? That really threw us for a loop!

A week from this Saturday my mom and step-dad are having a fundraiser in Lee's Summit along with other friends/ volunteers. There is going to be great music and several different bands, live auction along with other items for sale on the side of the event. Food will be available.

July 24, 2010

9:00 am to 7:00 pm

VFW Hall

329 SE Douglas Lee’s Summit, MO 64063

816-524-8498

$5.00 donation at the door

Here are some pictures I got this morning of Brisan's nose. You can see he is pretty swollen!

On Saturday June 26th we had a fundraiser for Brisan and Parker. Northland Auto Body and Mrs. Darla Sartain organized a great event for the boys! It went super well and saying thank you will not even begin to describe how we truly feel! If you'd like a t-shirt we still have some available. Please send Jenn an email @ jennifer @ bripardun .com .

Brisan has had a pretty hard time this week. In the last two days he has had a couple gelastic  cataplexy attacks that has sent him once into the tile on the fireplace and the other one tonight into the ottoman. He lost both of the battles! I wanted to get a picture up here to show everyone but didn't get that accomplished this evening. His poor nose, lips, head, and whole face is just bashed up. He has scratches on his nose and his upper lip/ nose area is all swollen! Now some of you are asking “doesn't he have a helmet?” Why yes, yes we do but it doesn't protect the front of your face.

The next step is to see the neurologists and see what medications they can give him to help this sudden lose of muscle tone. Some of you might not know but this is apart of Niemann-Pick Type C and its progression. We really don't want to keep him in his chair the whole time while he is inside our home. He needs to be able to move around and keep working his muscles out!

Parker and Brisan both have had bleeding this past week (we all know Brisan has with all his facial injuries). They've upped their infusions of DDVAP to twice a week now. So we almost have a nurse in our home everyday during the week now!

Parker isn't doing well eating his food. We know the kid loves to eat but he just doesn't chew his food and can put Joey Chestnut (hot dog eating champ) to shame! The only problem is he starts to get bug eyed and starts choking / aspirating his food. At this point we can't just take his food away. He'll have that cruel situation to deal with later when his brain forgets how to do that. This is tough on us because we don't want either to happen.

Tomorrow (June 30) is the last day of summer school for the boys! Please keep them in your prayers. They aren't doing well except they aren't in the hospital which is a great bonus! NPC is progressing and although it is variable for every patient, it isn't fun to watch them lose the things you and I take for granted.