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

Archive for the ‘Brisan’ Category

The last few weeks we have been searching for a full time registered nurse for Brisan and Parker. A long story short we decided to do away with our health aide and with that meant we had to find a new agency if we wanted to go with skilled nursing. Currently the agency that is assisting us has stated they have had trouble finding a person that would be willing to work the 1-9pm shift Monday through Friday. Read the rest of this entry »

Just wanted to share these pictures that Mrs. Hall took of Parker and there are some of Brisan when they were in the same class for a time.

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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On May 20th Parker graduated Early Childhood or better known as Preschool! He was the only one to graduate out of his class this year. We are very proud of him and it is also a sad moment because the teachers have seen Parker and Brisan both grow up in their classrooms. He is such a cutie and he diffidently earns his nickname “stinky”. I purposely put him in his shirt that has Charlie Brown on it saying ” I do my own stunts”. This is all very true. Brisan's graduation from Kindergarten will be this upcoming Friday.
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It's been busy in the Stults household. To say the least that is. Well heck…when isn't it? We found out that Duncan was accepted as a peer model for Early Childhood at the Grain Valley School District a few weeks back. That is so exciting for him! He really has been urning to play with his “friends” he calls them.

Mr. Parker and Mr. Brisan have been playing “who can throw up the most” game. It must be some weird college game or something. Maybe it was from watching Americas Next Top Model? (It's ok to laugh at my silliness). All the vomiting has thrown a damper into pretty much life. That would mean changing feeding schedules, school, and etc. As of the time I write this post it has settled a tad down.
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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.