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

Posts Tagged ‘Parker Stults’

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

Wanted to wish everyone a Happy Thanksgiving! We have many things to be thankful for.

Today the boys will get their infusions of DDVAP (Desmopressin) a few hours earlier so we can enjoy our Thanksgiving Lunch with family here at the house. Jennifer will be doing the infusions with the help of our nurse today. I plan on taking a little video of the whole process to share with everyone.

The bad news is we found out Monday that 1 of the 2 companies in the US that manufactures the Desmopressin has shut their plant down. That leaves a huge shortage and we were informed that the drug is on indefinite hold until further notice. That simply means to us that on Monday November 29th will be Brisan and Parker's last infusion.

At this time we don't have another option to help try to control their bleeding issues which leaves a big void of unknown and uncertainty in that area. You would think there would be an alternative drug we could use but that isn't the case this time around.

Enjoy Turkey Day!

Picture credit: http://www.businesspundit.com

Just a quick update for everyone. Brisan has been doing well. A few throwing up spells but overall he has been in good health considering all things.

Parker has taken a couple big spills forcing us to have him stay in his chair more often. We don't have enough bubble wrap to put up every where in the house! They both have been enjoying school which is a delight!

Duncan is still potty training. For the most part he is starting to get the hang of it. We have a meeting Friday to see if he will start school on his 3rd birthday in January.

We still are dealing with health insurance and trying to figure out the best thing to do. Having Brisan and Parker on Medicaid isn't the best option but realistically we are being priced out of the market for private insurance.

Just wanted to share a quick video from Brisan's 6th birthday party at Pleasant Valley Baptist Church in the Connection Cafe. That place is the perfect set up for entertainment!

Brisan hasn't felt well since yesterday morning. He threw up which was interesting enough considering he has a fundo placed (keep him from throwing up). Enjoy the video below.

Brisan's 6th Birthday Video

Brisan started Kindergarten this week! Parker also started his last year of Early Sped which kicked off in the new Early Childhood Development building about 1-2 miles away from the house in front of the district building. They both seemed to have a good week from the feedback we received. It is kinda nice that Parker leaves earlier than Brisan now. We don't have to rush getting both ready at the same time.

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Last week was a very busy week. Brisan and Parker both started physical therapy at Children's Mercy Hospital. It is kinda of funny that they “started” when we went almost two years ago and told us that “they didn't know what they could help us on” and that “oh…Medicaid will pay for these for visits”. HA…that wasn't the case with Medicaid. The good part is they are getting additional therapy. That is what matters most.

Also they met with their new neurologist. They started the boys on a cataplexy drug this week as well which is one pill at night. It should help manage when they lose muscle control and fall. She also consulted with Dr. Marc Patterson on resuming the boys on Zavesca. So that will be started up again very soon! That stuff is pretty expensive (like 190,000 for both of them). It will be interesting when we will have to find new commercial insurance at the end of the year.

On Wednesday August 11th, Brisan and Parker had a minor surgery to remove the granulation tissue around their G-tubes. Starting next Wednesday they both will start school. For Brisan it will be Kindergarten! Big day for the big birthday boy this month. On the 27th he will be 6!  We still can't believe it!

Jennifer's Dad Tim purchased a swing set for the boys. Last Sunday we started putting that monster together! Now we know Brisan and Parker probably aren't going to be able to enjoy it like more traditional kids their age but hopefully they will find something they will enjoy. Duncan probably will! The neighbor girl was telling her mommy that “mommy they are building my swing set”. HA