Posts Tagged ‘Stults Family’
Tomorrow August 8, 2013 will mark the 5 year anniversary of what we call “the phone call” regarding to Brisan and Parker's Niemann-Pick Type C disease diagnosis.
It seems that every year is going faster and faster as we move further into the the upcoming years knowing that time isn't on their side. However, we do have some good things to celebrate and not to make this post all about being sad. We will be moving soon to a new home that will allow us some positive situations. The down side is we will be giving up other things like the boys' school teachers, nurses, and even friends we became close with. The whole situation seems to be showing much favor for us. Duncan will be starting Kindergarten here next week! Their new school seems to be really “going to work” for us already. I hope that they keep that level of excitement in the upcoming future.
Since March I had started a new opportunity and have been focusing on leveraging my skills to be a key contributor to my team. Everyday I look forward to bringing my “A” game and putting a positive stamp on it. We've not had any foster kids in our home since Memorial Day weekend. It has been very nice most of the time not to have that additional responsibility… at least that is how I feel :). Jennifer has stayed pretty busy herself.
Just a quick update on what's been going on over here in our household. A few weeks ago we finally started with a new home health care agency for our nursing situation for Brisan and Parker. So far… so good. It is huge to us that we have this type of help. Unfortunately the process of acquiring a new nurse and finding that right person is beyond a full time job. Thus far, the agency has taken a customer centric approach which we haven't had that for years… literally. They just epitomize the definition of customer serve. We shall see, right? ha
Brisan and Parker are out of school now until summer school starts here in next month. Duncan is just a blast. He just comes up with the funniest stuff. We talked about just making him a basic website where we can post his “Duncanism's” of the day. LOL
You know.. Niemann-Pick Type C disease (NPC) is such a roller-coaster of a disease… like many rare diseases and others that are more common. Everyone wants to know what the “path” is going to look like. Sadly, we just don't know either and explaining what that “looks like” can be taxing. I know for me personally I will say they are doing “fine” because it saves me from some long winded answer. The dudes surprise us everyday whether that is up or down in their situation.
Thank you to each of you for reading and keeping us in your prayers!
One day Parker will stop making eye contact. When he locks his eyes onto ours and holds that for a little bit, it is so precious. They say a picture has a thousand words but that doesn't begin to describe the feeling when he does that for us. Brisan prefers not to make eye contact and will turn his head of nod downward. We will take what we can get!
The joy in Parkers eyes when he is feeling good is indescribable. This morning I told him “thank you” for giving me that warm smile and looking into my eyes. This was all after he had thrown up all over himself during the night and had a severe blow out. I had just given him a bath. This is a daily occurrence in the Stults Family!
Being parents of a child or children with a rare disease like Niemann-Pick Type C or Niemann-Pick in general, isn't the most joyous club you ever wanted to be apart of. I know parents of other rare diseases like this have similar feelings. We are fighters, we have hope but mostly we have a tender heart that is very personal towards the situation. Love doesn't begin to explain the magnitude of our feelings.
Jennifer and I know that those days are numbered. We aren't negative nelly's who think about the down side of what is going to happen but we are human. We have feelings. We're not superman or superwoman 24/7 like some people think outside our home. It makes me tear up after looking into his eyes knowing the outcome for both Brisan and Parker. We hope that our story can positively affect others.
Brisan, the last handful of days just hasn't been himself. We think his ileus came back and he will break into these random crying spells. We feel so helpless for him because the carousing we have attempted just hasn't seemed to work. He is also very tired and rightfully so.
This morning, poor Parker is having his turn like I mentioned above and is running a slight fever. We think he will be ok to say the least!
Hug your family, love your spouse, and say thank you to the Lord!
A tad bit behind on getting this posted up but wanted to share the link to the article on the 2nd half of the story the Grain Valley Pointe Newspaper written by Chris Fischer.
We have been very much appreciative of them taking time to share with the public at large about Niemann-Pick Type C disease. It helps spread the word!
Read More Here: http://go-tiny.com/StultsFamily2
The Grain Valley Pointe Newspaper did a follow up story on our family since they first visited with us back in 2009. Chris Fischer is doing a 2 part story on the follow up.
We are very thankful for their time to spread the awareness of a horrible disease like Niemann-Pick Type C.
Here is the article: http://www.grainvalleypointe.com/?p=4762
This year on July 28-30th the National Niemann Pick Disease Foundation (NNPDF) held their 19th annual Family and Medical Conference in Norfolk, VA. It was a great location in a naval town right on the bay! Me and Jennifer were able to attend for the first time since we learned of Brisan and Parker's diagnoses in August of 2008.
The greatest benefit that we felt we received was the connection with other families putting that name with a face. Those are friendships that will run deep over a lifetime. As one parent who lost their daughter in March of this year said, “None of us in this room ever wanted to sign up to be in this club”. He said that exactly on the button!
Meeting other kids and a few young adults with Niemann-Pick Type C, A & B, we felt some positiveness and some negativity in the room. Honestly not everyone is able to be chipper 24/7. We were able to see first hand what different stages of NPC looked like. It kind of gave you an idea of what things may look as things progress more. It is so very true that you can not compare two kids the same age. The disease manifests itself so much differently which is the frustrating part for researchers and parents afflicted by this horrible disease.
Another benefit was listing to an array of doctors/ researchers such as Dr. Marc Patterson, Dr. F. Denny Porter, Dr. Dan Ory, Dr. Fran Platt, Dr. Steven Walkeley, and a few more talk about different areas they are researching but more importantly the collaboration they all partaking in.
An upcoming beginning trial of Cyclodextrin in 2012 at the NIH is in the works of coming to life. Some of you reading this have heard about this sugar compound that has shown great use of removing cholesterol out of the cell. Albeit they don't fully understand why it does that, this could be a good insight into Niemann-Pick Type C as a whole. Dr. Porter carefully went over how they planned to administer Cyclodextrin and cautioned us that there are unknowns that can pop up during this beginning phases of an official trial.
The families that attended were beyond wonderful people. Having NPC, NPA or NPB is not a disease that you would pick if you had to pick one.. you know? There are some immaculate people that showed immense courage to be there, wake up every day to love their loved one, and show they are not going to let this death sentence ruin our time here on earth!
Our hearts go out to everyone we met affected by Niemann-Pick Disease. The reality of it all is extremely sad and brutal on your emotions.
Here are some pictures we took while there: [ http://www.bripardun.com/55l ]