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

Posts Tagged ‘puffs’

Well hello there! It has been a few months since we last updated everyone on our blog. Our emotions have been a whirl wind of ups and downs which are to be expected but until you FEEL them… there is no preparing for the response of how you truly feel in that moment. A typical day of emotions rise with a constant thinking of Brisan. You still think about how unreal at times it really feels in brief segments but you always turn back to knowing he has been “healed”. That doesn't make it any better…. let's be truthful in the matter. We still have his bed up and pretty much the way he left it. Not a moment goes by you don't look over that way visualizing him sitting up and watching TV or something.

At times when you love on Parker you see glimpses of Brisan and for a tad second you feel guilty because you don't want any of your feeling to take away from the precious moments left with Mr. Stinky. He has been a fighter. When he is in a good mood… he makes an occasional “humming noise” with a slight groan. It is kind of like his “Master P” lyrics. Make them say “ummmmm”. (I am sure not all of you will get that 🙂 ).

Pete's Puffs Delivered

In the New Chapel at Children's Mercy Hospital | KC

So in honor of our Bubbas, Jennifer orchestrated a Tissue drive so we can help Children's Mercy Hospital out because again… who wants to wipe their nose on sandpaper? Bueller.. Bueller? After 606 boxes (thank you guys for all of your support on this!!!) and sitting in our dinning room since the end of August ( I know… I know…), we carefully labeled them with the Pete's Puff's logo and a quick story about why they may have this box of tissue at their hands to use. So 606 individual boxes and 13 moving boxes packed up… we made our way down this past Monday, December 22nd to deliver them to the volunteer/ chapel / care team to quickly disperse.  Read the rest of this entry »

On Sunday, August 31, we are having a Celebration of Life for Brisan. His 10th Birthday is upon us this upcoming Wednesday, August 27th. A milestone birthday to say the least for any kiddo except there is no big party with his physical attendance that we will be able to snap a few “pictures” of. Life is such a stark kick in the nuts, wouldn’t you agree? It will take place at Pleasant Valley Baptist Church in the “Well” from 6-8:30 pm. Drinks, food, and music by Jason Ellsworth will be provided! We hope those locally can attend and just enjoy some fellowship. After all, he’s on the best vacation of his life!  Read the rest of this entry »