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

Archive for the ‘Parker’ 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 »

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

It's been awhile everyone! It's been a crazy last few months. We've welcomed a few little ones into our home through foster care, one has left, I've started a new position with a new company, and Jennifer has been busy with her crafts & bakery. The past 2 weeks I have been out of town so kudos to Jennifer, friends, and family who stepped up out of their kindness to help accomodate her while I was unable to chip in with everyday life around the Stults household.

The boys have been doing ok. Still dealing with seizures and trying to keep Brisan as healthy as possible. He's been on that line of either getting really sick or just being real “junky” all the time. We have him on antibiotics to try to help starve off any pneumonia, which is the biggest concern for either one of them since they are so weak already.

Duncan is doing good. He was very sad when little “B” (girl) left us last week. They moved her to a kinship.  Duncan has really been into playing the ipad game “mindcraft” where he get's to build things and etc. We've had to try to “monitor” his use a bit more.

We have more but just wanted to get something posted up on the site. Thank you guys again for all your prayers!

It has been a little bit since we last updated everyone! Our household has been a bit crazy.

Adoption?

We found out on March 8th that we are official in the regards to being licensed foster parents in the State of Missouri. Some of you may have known that last year we started the process of going that route. Our end goal is to adopt a little baby girl considering our genetics aren't quite in our favor. Never been that good at playing poker.

We do understand that some people may not agree with this route and rightfully so but deep down inside when you get that gut feeling it is the right thing to do. We know nothing has been easy.. heck you can look back over our time with our family with Brisan and Parker.

The Boys

February was fast and furious right into March. Poor Mr. Parker has had a very hard time with seizures. They are picking up in frequency and severity. Last week we finally had enough and he was admitted into Children's Mercy Hospital to try to figure this out. A few of his meds were up'd but he'll need some time to adjust. Back in February… he was very sick… very weak. No muscle control… like a big floppy noodle to say the least. We haven't experienced him that way.

Brisan has been the normal “Bubbas”. We started him on the cough assit machine which has been helping him. He still sounds pretty “junkie”. Over all he has been pretty good. A few weeks back, our Wednesday nurse helped him walk into our room and you can see his “eyes” light up. He hasn't been in our room at least a min. of a year. He use to walk/run in here all the time. I had her walk him into our bathroom which was another place he like to go. It brought back a lot of memories and made me very sad because of all his abilities that he has lost. They both are unable to walk on their own. Parker is so much weaker than Brisan. Parker use to be a tank.. solid.

Duncan… well this little crazy 5  year old is something else. Quite the hoot. We've had to take his ipad away a few times . Mainly due to him coming across seemingly ok videos to watch like video games and etc but the language gets a bit fowl. We think we have found a solution for this with iTubeList app. We are thinking of not giving it back anytime soon. We certainly don't want technology like this taking over his life so young w/o supervision. You can really see him growing up.. .asking questions. He got sad a few weeks ago because he mentioned about “dying”. He started crying about the conversation. 🙁

Thank you to everyone for their kindness! Please keep us in your prayers.

Man time really flies. It is so hard to believe that in this past few weeks we have celebrated Parker’s 7th Birthday and Monday is Duncan’s 5th Birthday. It seems just like yesterday we were bringing Parker home from the NICU and Duncan from the hospital. As you all know I go BIG for Birthdays around here. We had a “Jenn style” party for both Duncan and Parker last weekend. The theme was “the Lorax”. I have to say that I think this was one of my favorite parties yet. We had a great time with our friends and family even if there was like 60 people here!

The Lorax Party for Parker & Duncan – 2013

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This year we celebrated Halloween with our small group from church. For Brisan and Parker this was their first year out since 2008. Either someone was sick, in the hospital, or it was way too cold to have the big boys out. Duncan was getting so excited leading up to the day!

Brisan was a Tank!

Brisan Stults – Tank Wheelchair

Parker was Ratatouille and his was a Stove Top Wheelchair! He kept trying to kick it off his tray. HA

Parker as Ratatouille with his Stove Top Wheelchair

Then Duncan was Darth Vadar! His little buddies Seth & Keegan were apart of the “force” as well.

Duncan as Darth Vadar

All this was possible because of Jennifer's hard work and creativity. Overall we had good fellowship and Duncan had so much candy in his “satchel” that he was wobbling. He tapped out because he was pooped!