Archive for the ‘Duncan’ Category
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!
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!
Parker was Ratatouille and his was a Stove Top Wheelchair! He kept trying to kick it off his tray. HA
Then Duncan was Darth Vadar! His little buddies Seth & Keegan were apart of the “force” as well.
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!
Duncan decided he needed to call the police because I wouldn't go get his “bullet” from behind the couch. Take a listen below…
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.
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.
Just a quick update on what's been going on over here in our household. A few weeks ago we finally started with a new home health care agency for our nursing situation for Brisan and Parker. So far… so good. It is huge to us that we have this type of help. Unfortunately the process of acquiring a new nurse and finding that right person is beyond a full time job. Thus far, the agency has taken a customer centric approach which we haven't had that for years… literally. They just epitomize the definition of customer serve. We shall see, right? ha
Brisan and Parker are out of school now until summer school starts here in next month. Duncan is just a blast. He just comes up with the funniest stuff. We talked about just making him a basic website where we can post his “Duncanism's” of the day. LOL
You know.. Niemann-Pick Type C disease (NPC) is such a roller-coaster of a disease… like many rare diseases and others that are more common. Everyone wants to know what the “path” is going to look like. Sadly, we just don't know either and explaining what that “looks like” can be taxing. I know for me personally I will say they are doing “fine” because it saves me from some long winded answer. The dudes surprise us everyday whether that is up or down in their situation.
Thank you to each of you for reading and keeping us in your prayers!
Just wanted to share a few pictures with all of you. On Friday, March 16th, Brisan & Parker's whole class went outside to play a little kickball! Parker every Friday morning has physical therapy down at CMH so Jennifer drops him off about mid morning for school. Parker wasn't too excited at times. He never likes anyone touching him much. So funny really… little crab cakes at times. I guess I can't blame him. Jennifer said just watching them out with their class mad her want to cry! Brisan waddled around the bases as well and he was even kill most of the time!
Duncan went to grammy and papa's house Friday and papa took him fishing for the first time! He caught 4 fish and said that the worms were “slimy”. What a funny kid!
Here are the pictures!