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

Archive for the ‘Parker’ Category

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.

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 »

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.

Read the rest of this entry »

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

It has been a few weeks since we last gave an update for everyone. Brisan and Parker seem to be doing better for now. We haven't had any ER trips or anything very special.

Last weekend my mom and step-dad put together a fundraiser for the boys. It went well for the first time they've attempted something of that nature. To us we were thankful and any help is indescribably appreciated.

I did get a few questions if I found work. The answer is yes! I started a few weeks back with a similar company as the one I worked at before in the online marketing space. I can't take credit for this opportunity. It really was God putting it in my lap. I had other interviews but things didn't work out as far as pay or just the overall situation. I am aware that my previous employer isn't too excited for me to have this job but I am fond of living in my home and providing for my family. They certainly didn't consider my family to thoroughly when they eliminated my position. My intentions are pure and nothing in me wants to be detrimental.

Here on August 8, 2010 will mark the two year anniversary that we received the crazy news about the diagnosis of Niemann-Pick Type C. Below you might have heard this recording in the past but it was a few days after his tonsil and adenoids surgery he called me at work and left me a voicemail. The sad part is  he talked pretty well at that point but now he is pretty nonverbal. Now he can still talk but just doesn't choose to say much anymore. If so they are typically one word phrases.

Brisan5-27-08 by MichaelStults