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

Archive for the ‘Parker’ Category

We haven't wrote for a few weeks. I went out of town for work last week and Mr. Parker on the 8th turned the BIG # 5!

The new year has started off well. Things for work (Mike) have been going well and progressing nicely. Jenn has started her master classes for school. I know she is so excited (minus the homework). Still trying to find suitable insurance but the price tag is very scary. It is well more than our mortgage yet we know we have to make a decision as soon as possible.

Brisan has been doing much better but he did develop a rash around his port-a-cath this week which caused us not to be able to access his port for their DDVAP infusions this week. On that note…looks like they have made arrangements to keep the supply of the drug to us :). Thank you for your prayers! The rash is essentially a yeast infection. You don't want to risk injecting that into the bloodstream because of the risk of all kinds of non fun stuff for him. We are applying topical and an oral medication to get through it. Brisan is a funny boy…. cute as well. He doesn't like to take a nap and we are glad he is being  himself since we've got a hold on that previous eye infection.

Mr. Parker… oh Parker! We should be getting his new wheelchair anytime (like six months later). It is identical to Brisan's but his will be blue. Still issues with bleeding but they are much more controlled. Now that doesn't mean we can tame him during the times we need to get the bleeding to stop :(. He has been enjoying school but you can clearly see his struggles walking and transitioning to different services. End of last week I went up stairs to check on them and he was stuck on the floor in between his bathroom door and the hallway.   He doesn't know how to compensate to get up since he couldn't lean forward to gain leverage to be able to do so. Hard to imagine that 5 years ago we were blessed to have him!

Duncan's 3rd birthday is upcoming on the 28th this month! This boy is something else…oh wait, maybe normal for the most part? He never ceases to amaze us. One day I came down from upstairs and he said “Hi Dad, whats up?”. LOL We've been working on potty training with him. I think he owns more underwear than all females combined on our block. It's like he needs to make a fashion statement!

Duncan was evaluated for potentially going into a pre-k class like Parker but the school district is saying he isn't smart enough to be a peer model yet not “dumb” enough to be apart of the program. (No that wasn't there exact words). We felt he should qualify based upon other areas. He especially has two older brothers that are poor models for him to interact with. We would like to get him around other kids his age as much as possible. It would be nice if we didn't have to work to be around him all day and just have a blast with them all!

Thank you again for everything!

[cincopa AwAAEbaOqDwD]

Wow, it's 2011 already. Seems like we just were starting 2010 and feeling funny about writing “10” on the end of our dates. ha

Christmas was incredible this year and we have so many things to be thankful for! Brisan & Parker started school on the 4th. It feels very nice to be back into a routine of some sorts. I can tell they are happy to. We have some new medications to try this month which is always fun. I think they are walking experiment labs…

Duncan still is being a cute little boy. He walked up to Jennifer last night and hugged her saying “your best mommy'! Ahhhhhh We've been potty training him and he is making progress. Sometimes he would rather hold it. He's getting pretty close to the world record I think… JK.

For our non profit Niemann-Pick Children's Fund, we have some lofty goals this year. We also have some projects to help raise more awareness. No matter what, this all benefits everyone affected with Niemann-Pick Type C. So I hope others in our disease community and other groups realize that.

Thank you for a wonderful 2010 in praying, loving, and keeping us in your thoughts. We're humbled each and every day for the support you truly provide for us!

We have much to be thankful for this year. We've been overwhelmingly surprised by kindness this month and without going into detail we'd like to say THANK YOU!

Merry Christmas and Happy Holidays!

Date: January 15, 2011

Place: Lee’s Summit North High School Field House/ Concession Stand

Time: 12 p.m. – 3 p.m.

Goal: To host a carnival type event to raise money for the Stults family

Lexxi & Kara have graciously organized this fundraiser for our family. They are incorporating it into their DECA marketing project for school and our both seniors at Lees Summit North High School.  Out of all the other things they could have done they choose our family. It all was because my mother had put a flyer out early summer for a fundraiser they held in Lees Summit, MO and they happened to come across it.

We encourage you to attend and bring your family. This is a family oriented event and with the social connections that kids have in school this will be a FUN and great event to be apart of. Please come out and have a great time!

Well good news…Brisan and Parker will have their Desmopressin (DDVAP) infusions until the end of the month (for their bleeding problem). Our infusion company and our hemoc doctors are working very hard to find the “goods'! We don't know what will take place after the beginning of the year though. Still good news.

The boys have been great this week. Nothing major to report (thankfully). Duncan did have his evaluations to see if he would qualify for ECSE (school). He has been progressing much better so it is a 50/50 shot we get in the door we are guessing.

Thank you for all your support.

Here is a quick video we put together for Brisan and Parker in regards to promoting Niemann-Pick Type C disease. Many of you might have already seen this on Facebook or from another source.

As your watching the video please think of creative ways you can help spread the message. It might not be monetarily with the Niemann-Pick Children's Fund but it could be through other random acts of kindness. Keep in mind that Niemann-Pick Type C holds a lot of valuable information that could unlock doors to other common diseases that are cholesterol related.

Thank you for taking time to read this post and watching our video.

You can find us on Facebook [ Niemann-Pick Children's Fund ] : Niemann-Pick Children’s Fund