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

Posts Tagged ‘ileus’

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.

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 »

One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!

The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!

Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.

Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.

Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.

This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!

Hug your family, love your spouse, and say thank you to the Lord!

Mr. Parker turned 6 on Sunday January 8^th! We are very proud of our little man! For the last 3 years I have been out of town for work and haven’t physically been here to wish him Happy Birthday! Every year is so special to us!

Saturday the14th we are having a “Beach Party” theme at our house for Parker and Duncan. His birthday is January 28^th, so he has to share his together with everyone. I am sure as he gets older he may prefer to have his own shindig.

Last Saturday Brisan decided it would be cool to visit the ER again. I left that Saturday for Las Vegas but the poor kid had not went to sleep the previous evening. That is literally no joke. I think he was preparing for college or some stuff…

He went into the ER for what they discovered was ileus. First time for everything hey? Just a lot of discomfort but we think it he is on the amends.

 “Ileus (adynamic or paralytic ileus) is a type of bowel obstruction that occurs when the intestines stop moving normally even though there is nothing blocking them. This prevents the digestion of food and the movement of waste out of the body.” [WebMD]

Next week Jennifer will graduate with her BS in Applied Behavioral Analysis!