Posts Tagged ‘Kansas City’
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.
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.
Today Brisan turns 7 years old! Happy birthday son!
Unfortunately for him he has been in the hospital since Tuesday August 23. Tuesday morning he had thrown up a few times and developed a swollen jaw on his right side. Later in the afternoon he started to go into septic shock and was turning grey. I was in New York for work and it wasn't easy to try to get home quickly. Those were critical hours and was told that this could be it.
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Wow, it's 2011 already. Seems like we just were starting 2010 and feeling funny about writing “10” on the end of our dates. ha
Christmas was incredible this year and we have so many things to be thankful for! Brisan & Parker started school on the 4th. It feels very nice to be back into a routine of some sorts. I can tell they are happy to. We have some new medications to try this month which is always fun. I think they are walking experiment labs…
Duncan still is being a cute little boy. He walked up to Jennifer last night and hugged her saying “your best mommy'! Ahhhhhh We've been potty training him and he is making progress. Sometimes he would rather hold it. He's getting pretty close to the world record I think… JK.
For our non profit Niemann-Pick Children's Fund, we have some lofty goals this year. We also have some projects to help raise more awareness. No matter what, this all benefits everyone affected with Niemann-Pick Type C. So I hope others in our disease community and other groups realize that.
Thank you for a wonderful 2010 in praying, loving, and keeping us in your thoughts. We're humbled each and every day for the support you truly provide for us!
Date: January 15, 2011
Place: Lee’s Summit North High School Field House/ Concession Stand
Time: 12 p.m. – 3 p.m.
Goal: To host a carnival type event to raise money for the Stults family
Lexxi & Kara have graciously organized this fundraiser for our family. They are incorporating it into their DECA marketing project for school and our both seniors at Lees Summit North High School. Out of all the other things they could have done they choose our family. It all was because my mother had put a flyer out early summer for a fundraiser they held in Lees Summit, MO and they happened to come across it.
We encourage you to attend and bring your family. This is a family oriented event and with the social connections that kids have in school this will be a FUN and great event to be apart of. Please come out and have a great time!
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.