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

Posts Tagged ‘Niemann-Pick Type C’

On May 27, 2011 Brisan Stults graduated Kindergarten! He wasn’t too happy as you can tell because he wanted to stay in his chair. Kate his trustee sidekick and nurse…mainly his buddy wanted him to walk in with his class. The backpack he is wearing has his feed supplies and pump because he was in a middle of getting some food in his belly. Below is the video of his graduation and a few parts from the class ceremony.
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It seemed that March was the longest month ever. We have been anxiously waiting on some news but either way it is out of our hands at this point.

Brisan Parker Duncan 4-3-2011

Jenn has been completing both her bachelor’s and master classes simultaneously. This requires a lot of work for her and frankly I have no idea how she is able to write so many papers on subjects I find incredibly dull to say the least. I am very proud of her and I know we both want it to be over with. Some people would ask why is she in school when we have the situation with Brisan and Parker? School started long before we knew about the boys’ diagnosis. I told her if she starts then she needs to finish. Having student loans isn’t much fun especially if you have no piece of paper to show you created debt for societies purposes.

Tomorrow April 6th we have a school meeting for Parker to talk about what kindergarten will look like for him in August. The talk has been that they will keep Brisan & Parker together which we feel is a great thing. Overall there is no real progress with the goals that we set out for them to do. We hate getting these report cards that we have to sign and return. Just reading them clearly reminds you that the situation is dire. I will say that their teachers try to do a great job of keeping it positive the best way they can and also includes any little thing that might seem to be an improvement.

We’ve been trying to figure out the right dosage and feed schedule for both boys. Sometimes it seems it works fine then the next moment they are playing out the scene from the Exorcist. Per Kate Brisan’s nurse at school he sometimes will eat and other times he will take a few nibbles. We notice the same thing at home. He really doesn’t like to do any drinking by mouth much anymore. That has been creating some nice chapped lips and sores in the creases of his lips. Poor Parker just doesn’t say much any more. Well actually…nothing. Just looking cute and floppy.

We’re hoping we can get a few fundraisers going this year for the NPCF.

Brisan at CMH 2-18-11

On Saturday February 19th Brisan returned home from Children’s Mercy Hospital. Jenn had taken him in on Wednesday evening with concerns form our carousel & his school nurse along with ours that something was going down. He had puffy cheeks, feet were swelling, and his abdominal area was pretty hard. Back in September, these were similar things that took place. We wanted to be cautious and even more proactive to prevent him from going into distress.

Jenn had asked for them to culture the inside of his g-tube hole but at the given time the consciences was that might not be the problem. Over the next day it did grow and sure enough it was another Staph infection. Along with that he has an upper respiratory infection of some kind going on to.

He is at home resting and appears he will be making a recovery with the antiobotics and game plan they’ve set fourth for us at home.

*Should be posting Parker & Duncan’s birthday pictures soon! Also a news video of our family from a few years back.