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

Posts Tagged ‘Brisan’

A very good question these days, “How are you doing?”. One that we will continually have to develop and fully find the answer for us. April 4th marked one month that Brisan went home to be with Jesus. He's laughing, he's running around, he's doing all the things this life wasn't able to fully give him and he's doing it all CARE FREE! You talk about a gift that you can never give a your child when you are physically unable to change the outcome of their abilities.

We miss him terribly. We've left his bed pretty much the way he left it when the paramedics came to take him down to the hospital. Your “normal” coming inside to greet Brisan after you put Parker & Duncan on the bus really hits you at first and it still kinda of does. Bedtime is still strange like there is this “blackhole” in your home. There isn't a moment we both aren't thinking about Brisan. Things that made us laugh, smile, and feel good as a parent. Memories that are so far engrained into your mind that at times you may have forgotten about.

I think about his love for “sweet tea” or better known out of Brisan's mouth as “teaaaa” (imagine in a southern twang voice). Although later the past 18 months he may not have been able to really “take a sip” of the goods… I know he was thinking it! You could just see the look in his eyes! Like a cougar on it's pray minus when you offered he would turn away.  Read the rest of this entry »

Well, it's been a few months since I last posted. Much has taken place. We've moved and are getting settled into our new home and as you can tell by the title we've visited Children's Mercy again with Brisan. We think he must have missed the nursing/doctor staph.

GJ Tube diagram

On October 15th, Brisan went in for his GJ-Tube “upgrade” from his G-Tube. A relatively minor procedure since it only took a few minutes. He stayed over night as a precautionary measure to say the least and came home the next day. By Friday the 18th… that morning he developed a high temp. Read the rest of this entry »

On the 22nd Brisan went in for dental surgery and cleaning but…. he is still in the hospital. He only came home for about 5 hours before we had to go back last Friday night due to a high temp and extremely difficult breathing. This past Tuesday, Brisan celebrated his 9th birthday. The staff and child life at CMH does a wonderful job of making all kiddos feel special on their birthday.

He had a lot of air in his tummy but more importantly developed an infection (septic) after the surgery.

Last night he was able to go from the PICU to a regular room because of his gradual progress in the right direction. Unfortunately he is heading back to the PICU due to moving in the wrong direction. It just doesn't seem like he'll be coming home anytime soon. On top of all that, Parker has his dental surgery tomorrow and hernia repair. pfft.

Most of you probably have been following Jennifer or I's Facebook posts but wanted to get this on the site for those of you that may not be on Facebook.

May was an eventful month in many ways. We had a little man in our home through foster care, PV Family Camp, and just over all busy to say the least. Now the month is over we no longer have any foster children in our home and probably are considering strongly of putting that on hold for the moment. Really to much drama associated with something that shouldn't be too complicated.

Our annual PV Family camp went very well. This year we were apart of the “team” helping get things organized and conducted. It was an enjoyable time for most of it. The weather cooperated which is always a bonus for all the families! The follow day after we arrived home our nurse of the past 4 months decided to quit without notice. Hopefully we will find the right person that will fit our needs soon and who will be respectful to our home and personal life.

Duncan started pre-k this week. They do a kindergarten round up for a month and he seems to be very excited! Brisan and Parker have been fairly OK. Just seeing the seasons of decline in some ways and then it hits you about how you don't have normal kids who do normal things who are not able to participate in anything that your friends kids are probably doing. Life seems so normal to  us but once in awhile it creeps up and smacks you up side the head.

We are considering attending the annual Niemann-Pick Family Conference this year but more than likely if we do, only one of us can go. Way to costly to fly the whole family plus a nurse with us. Sounds immensely stressful at this point. ha

Duncan Starts Pre-k

Brisan & Parker at Church

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.