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

Archive for June, 2010

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.

Well maybe not completely! It has been of course a few weeks since we last updated every one. On 5/24/10 I unexpectedly was informed that my position at work was eliminated. The term “coming out of left field” doesn't even begin to describe the situation. The company had to make some tough decisions due to financial reasons. I am working hard to find employment else where. We hope that it doesn't take long because essentially they only offered me my last check. Talk about not knowing what will happen….We know God will provide but it is scary either way. Along with my traditional resume I created www.Hire.MichaelStults.com. It is something I am using with my marketing game plan to find a job!

For Memorial day weekend we went to Family Camp with Pleasant Valley Baptist Church. We are very thankful we had the pleasure of attending. It was difficult at times because Brisan and Parker unintentionally do get hurt while playing with their peers. With the reduced coordination skills it makes it more difficult for them requiring a ton more supervision. It was nice to get away…get away from life for a few minutes even though we're consistently reminded with the boys the differences they have between their peers.

Brisan, Parker, and Duncan have been OK. As you see from the pictures below Parker has been fondling his butt as if it was his own little worry stone. This is his new thing. The boys started EYS (extended school year) last Thursday. Jennifer also visited Leggit Trails in Blue Springs to see how that school fit the boy's needs or at least Brisan's for now. Jennifer felt after her visit that they have all the accommodations that we would need to properly provided full services for Brisan.

Thank you to everyone that has kept our family in your prayers. We are very thankful and always want everyone to know this. We all have lives and problems that arise in our worlds but for you to take time out of your day to lift our family up in prayer is very special. Please don't forget about the Car Wash Fundraiser for the boys on June 26th. Details Brisan and Parker Car Wash Fundraiser.