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

Posts Tagged ‘Stults Family’

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!

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

This past week has been very good minus one situation (get to that a little later). Brisan is doing wonderful. They came out Wednesday to adjust his chair since he has grown from when he received it last year. They had brought back his cover for the back of his chair but the zipper broke :(. So they have it on rush delivery to get fixed. He also received his “big boy chair” to use in the kitchen. That should be a bit more comfortable sitting at the kitchen table. Overall he has been in a good mood. Such a great mood that last Saturday he pooped all over our bed :). There still are concerns over his right eye and his ability to see out of it.

Parker has been in a great mood as well. He has really enjoyed school and went on his first field trip Tuesday (pumpkin patch). Today he had physical therapy and afterwards did some water therapy. Jennifer said he absolutely loved it!

Duncan is being a cutie and just saying funny 2 year old things. He has shown a lot of interest in baseball or any sport with a ball. Too bad that daylight is shrinking this time of year! He will start school at the end of January.

Now for the news we received last Friday (10-15). Jennifer was at Target getting refills on some of the boys' medications and they said Humana came back illegible. So she called me then I called Humana. The customer service agent stated that “my company” (no, not my company…my old company) canceled the plan. I knew they had recently closed their doors but did not put 2 + 2 together. The shocking part was we were not even informed of the irresponsible decisions of my old company. Looking back now we are thankful they kept open for as long as they did. Knowing what we know now we could have been out of insurance much quicker.

Some of you are wondering why we were on my “old company's” health insurance. I was laid off in July 2009. That prompted us to pay for COBRA.  It's not the best payment in the world but Obama's subsidy made it more affordable. At that time the best option was to keep our current insurance as we were familiar with it, we had met our deductible, and it was a plan that was generous in some areas verses others. Read the rest of this entry »