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

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

Monday night we had to take Parker into the ER because he spiked a 103 degree temperature. One of the main concerns with them getting their port-a-cath is if they do develop a temperature then we need to have them taken in immediately to make sure that there is no infection of the blood taking place. If that ever did happen…that wouldn't be fun for anyone involved especially the little men!

The blood culture takes a few days to get back so there was no diffident conclusion last night. The biggest shocker is that he has lost 6 lbs! He is down to 37 lbs which he hasn't been for a super long time! For a kid that loves to eat…

Thank you to everyone that has kept us in your prayers!

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.

Just something I put together about three weeks ago to put on my LinkedIn profile about Niemann-Pick Type C.