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Lots of Planning For Niemann-Pick

Life has been extremely busy for all of us. Brisan and Parker have been attending summer school a few days a week now and should be down soon. Duncan has been really growing up. He will be a peer model coming next month at school! Jennifer has been plugging away at school! Read the rest of this entry »

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Brisan Graduates Kindergarten!

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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Parker Graduates Preschool

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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Dude Wheres My Hat

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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Long Month

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

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.

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Happy March

No news is good news? I guess that can have a meaning in several different ways. 🙂 Hoping we receive good news this month on a very special opportunity. It wouldn't be about the Stults family but a very rare chance to affect a lot of lives.

We want to thank everyone for their continued support of our family. Brisan and Parker have been doing OK. No hospital visits since the last update in which Brisan was in for a staph infection. It appears he is getting all suited up for recovery since that time. They both have had a few projectile vomits after their feeds but nothing super concerning. We also have a new neurologist & pediatrician. We needed a new neuro that could help us manage this disease. Our pediatrician was a very incredible woman along with her staff but we honestly needed that doctor to be at Children's Mercy Hospital along with our doctors. Tough decision and I hope that no feelings were hurt doing the transition. 🙁

Duncan is just the silliest little boy ever. We really need to get him involved in some type of preschool so he can interact more with little ones to develop socially. Unfortunately Brisan and Parker are not the best peer models :(.

Jennifer has been baking for a few friends here and there  ( Stults' Sweets) and any money that she makes she will donate 20% to the Niemann-Pick Children's Fund which is our 501(c)3 we organized at the end of 2008. If you haven't already been to our page on Facebook please visit and “like” at www.Facebook.com/NPCFund. Our goal this year is to go over 1,000 “likes”. More importantly I hope we can generate awareness for Niemann-Pick Type C disease and rare disease in general.  You can also find us on twitter at www.twitter.com/NPCFund.

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