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

Posts Tagged ‘Jennifer Stults’

Tomorrow August 8, 2013 will mark the 5  year anniversary of what we call “the phone call” regarding to Brisan and Parker's Niemann-Pick Type C disease diagnosis.

It seems that every year is going faster and faster as we move further into the the upcoming years knowing that time isn't on their side. However, we do have some good things to celebrate and not to make this post all about being sad. We will be moving soon to a new home that will allow us some positive situations. The down side is we will be giving up other things like the boys' school teachers, nurses, and even friends we became close with. The whole situation seems to be showing much favor for us. Duncan will be starting Kindergarten here next week! Their new school seems to be really “going to work” for us already. I hope that they keep that level of excitement in the upcoming future.

Since March I had started a new opportunity and have been focusing on leveraging my skills to be a key contributor to my team. Everyday I look forward to bringing my “A” game and putting a positive stamp on it. We've not had any foster kids in our home since Memorial Day weekend. It has been very nice most of the time not to have that additional responsibility… at least that is how I feel :).  Jennifer has stayed pretty busy herself.

~ Mike

Last night, 11-11-11 we held our Vegas Casino Night. The evening was full of different casino games like craps, blackjack, texas hold'em, roulette, and much more. Matthew Lesko was a big hit and everyone wanted a picture with the famous Answer Man!

We held the event at the swanky Hilliard Art Gallery which provided a nice venue for this wonderful evening. The overall turnout was what we expected and the feedback was very positive. This certainly will give us a good building block for future events.

Christina Median of NBC Action news in Kansas City generously gave a portion on her evening to come down to the event. Here is the link for the newscast: Grain Valley family fights to find a cure for rare disease. We sincerely appreciate her and NBC for sharing airtime in helping us spread awareness of the event!

Should have pictures soon.

Thank you to everyone that helped spread the word and equally important, attended our event.

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.

Did we say how nice it was to be actually home all week and not traveling? This past Monday Brisan was able to access his port-a-cath for the first time since surgery on April 7, 2010. It was a calm week besides all the work Jennifer put into getting ready for the IEP meeting for Brisan, Parker, and Duncan on Friday the 7th.

Brisan's first usage of his port-a-cath

The meeting overall went well. Since Brisan is moving into Kindergarten next year, we needed to have the discussion on what was next for him. It was an emotionally charged atmosphere at times. We all know with Niemann-Pick Type C Disease that the outcome isn't pretty with the grim truth that there might not be an abundance of schools years left.  As a family we had many concerns if GV school district could accommodate us.

Brisan will essentially be going from 8:30 to noon, which isn't much different from now. He will participate in the regular class with his peers and also eat lunch with them. They agreed to hire an LPN for Brisan and starting Monday they will have an additional Para in the class for both of them for the remainder of the school year and beyond. Next year Brisan and Parker will both be in different buildings which poses a challenge. It probably is unlikely they will hire two LPN's.

The IEP isn't final until they formally write it up and give us our 10 days to review. We also spoke about Duncan starting next January. Parker's IEP will be talked about in this upcoming week.

Overall the stark truth was very sad and disheartening as we listened to all his inabilities. This is the time reality sets in and gives you a smack across the cheek. Just over the course of a year Brisan has regressed in a lot of his abilities. For others who are outside our home it might be hard to completely see this digression.

We will write more later! Honestly there is way too much to write about. If you have any questions please feel free to email Jennifer or myself .

Below are some pictures of Brisan graduating preschool on Thursday May 6, 2010.

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)

Well crime scene intact partially… We were up most of the wee hours of the morning with Brisan the “Flinstone Cat” not wanting to sleep and roaming between our bedroom and his. Around 6 am Parker comes up to my side of the bed and not thinking much of it Jennifer goes Parker is bleeding!

Took him in our bedroom and I can not recall the last time he literally had blood from head to toe on his body. All down both legs and arms including his face. The first go around it took about 30-45 minutes to get a clot to stick. During that time Parker turned into Rambo and tried to break loose. Can't blame him but it is frustrating since your trying to get him to calm down so you can apply pressure to his nose.

We put him in our bed and I proceeded to get ready for work. As soon as I was going to leave he blew a big sneeze. Must have been as powerful as the winds in Kansas City this morning! The 2nd gold rush started (minus the gold). That was talking another 30 minutes to try to stop it. At that point we just called the ambulance to head down to Children's Mercy Hospital. There they gave him DDVAP and checked out his hemoglobin. It was low. He is doing OK now after a long morning and early afternoon.

There has to be a way to help this out some way.