Posts Tagged ‘Parker’

Snow in May?

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!

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All Kinds Of Updates

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.

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Merry Christmas!

We wanted to tell everyone Merry Christmas! We have been appreciative of your support, prayers, and love you've shared with us! It is hard to believe we are entering 2013. The boys have been doing O.K. recently. Brisan is officially home bound from school until we look at the circumstances again in the spring. Parker lately has been having a lot of seizures :(. Duncan is a man on a mission with his “barines” (marines) and “army guys”….

Merry Christmas 2012

Merry Christmas 2012

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Halloween 2012

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 in his tank wheelchair

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

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

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!

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Brisan & Parker Eating

When me and Jennifer first started dating, she took me to a place her family had been going to for quite some time. The restaurant is a Chinese place called Hunan Gardens in Liberty, Missouri. Frankly, it was the first time that I was pleased to eat that kind of food. Before I had no real interest in eating anything other than “meat & potatoes”.

The owner's and staff were always so friendly. They shared with us the times we would visit including the births of Brisan & Parker. Over the years since we've moved about 35 minutes away, we've not been very much at all although we always say it is our favorite “chinese restaurant”.

Brisan and Parker over the years and shortly after Duncan was born, they loved to chow down on crab rangoons and veggies! Brisan when he was still speaking called them “cacoons”. Parker just hoovered his way through carrots and peas!

Since their diagnosis back in August of 2008, we have been coming less and less. Mainly due to the coordination and all the extra effort it is to pack up wheelchairs and the whole “semi like” approach to going anywhere anymore. We had dropped little Duncan off at grandma's and papa's house so he could have some quality time with them. Afterwards we stopped by because it was close.

That was the first time in probably 2-3 years we had been their with Brisan & Parker. Check out the video below on how they are trying to eat some of their old favorites. Due to Niemann-Pick Type C disease, the affects of it all as you can see are weighing in as they struggle to hold and complete the normal functions of eating that so many of us by default take for granted.

Aren't they so cute? Just want to squeeze em'!

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Duncanism

Hi everyone! Been awhile since we updated everyone on how things have been rolling along. A couple months into having our new nursing agency, we've seemed to have found a great fit in our home with Brooklyn and Dana. This past week we've been allowed to have a total of 60 hours a week! We are both very excited about this! It will allow for flexibility in the schedule to be able to do things at “other” times.

Duncan

Duncanism

Duncanism

We created Mr. Duncan Stults his own website: www.Duncanism.me . The goal is to post his “Duncanism's” he gives us everyday! The problem already is… he has so many to choose from! I guess adding another site to the “update” list may not have been a good idea!

Duncan has been growing so much before our eyes. He has finally “standing like a big boy” while going #1. That sure makes our life a bit easier out in public using the restroom. The only problem is if he isn't tall enough to aim it, he may be dangerously close to touching “germ central”. Yuck! Jenn's also been working with him on his letters. He prefers to call them “numbers”. Maybe a future engineer?

Brisan & Parker

Brisan and Parker have been on a two week break from summer school. They continue to loose more of the little things everyday. We don't admit it to people only because we may not be able to see it or maybe we just don't want to think about it. Like Brisan, he has a hard time keeping his balance sitting up now. Always falling to his right/back side. Changing his diaper causes him to have a small dystonia attack mainly because he gets all worked up over us laying him down to do what we've down the almost last 8 years of his life.

Parker…. well… he is quite the stinker! “Stinky McStinkerson” is his current nickname added to the laundry list of alias's he goes by these days. His overall motor skills are very poor. One thing that has been good to see the last few months is that when we have him on the floor, he will raise up on his knees and try to “walk” a couple nubs. Then it is plant your face central onto the floor which is the sucky part for him! On one hand you are excited for him to have that freedom but that freedom is going to cause him a lot of pain because he can not catch his fall. The kid can never sit still. He can rotate 360 degrees by flopping around.

Click here learn more about Niemann-Pick Type C.

Until next time.

 

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