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

Archive for the ‘Petes Puffs’ Category

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 »

Many of you are aware that on Aug. 31st we had a celebration to honor Brisan which normally would have been a big shindig for his birthday. Instead we had food, live music, and a “drive” for donations of Kleenex boxes to honor him. Our goal was 250 boxes to give to Children's Mercy Hospital to help get rid of the sandpaper we had to use during Brisan's homecoming March 3-4th. As Jennifer had stated, “No one should have to use sandpaper to wipe their nose after their kid dies”.

Petes Puffs Donations

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