Five Faces of Niemann Pick Disease - Week 5

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

 

 

 

Life of Dan - Life After Diagnosis

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.




This video was taken in July 2011, about one month after we received his NPC diagnosis.  You can see that he still knows my voice, but has trouble picking his head up, using his arms and hands, is drooling a lot, and has lost most of his sounds.

We tried to keep him engaged in activities and things he enjoyed as much as we could.  His mental capacity has probably diminished and his motor skills were significantly declined.  We didn't have any special equipment or support - no specialized stroller, wheelchair, high chair, or bed.  We didn't have any financial or family support.  It was just the 3 of us.

In just a few short months we went from a child who could at least crawl, to one who couldn't pick his head up.  We also spent 3 weeks in the hospital and weren't allowed to get him out of bed, so I think the muscles weakened which hastened the disease progression.


You can see the other videos of Dan here and here.

5 For Five - Oct 27

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read newspapers through June 20.  Nope.  Got through the 14th.

2. Finish clearing out the expired coupons. Partially completed.

3. Find the flannel crib sheets, which I think are in Dan's room. Looked everywhere and can't find them, so I think I sold them.  But a success because I looked!

4. Continue publicizing my October fundraiser. Done!  And continuing this week too!

5. Finish my phone cleanup and get rid of stuff I don't need. Another continuing project.

Not a great week.  I did some things.  So what are my goals for this week???

Five Faces of Niemann Pick Disease - Week 4

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

 

 

Life of Dan - NPC Taking Hold

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.

This was taken around age 4.  As you can see Dan still cannot talk and now is having trouble getting to a standing position.  You can compare this video to the others here and here.

One of the hardest things is looking at these videos so many years later.  At the time you see some of the decline, but you don't realize the extent until many years later.

When I was watching this one, I had tears streaming down my face.  You can see how normal Dan looks, generally, with the exception of being able to get to a standing position.

This is what NPC does to children....this is the regression.  This is what makes it so hard on families. 

Five for 5 - Oct 20

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read newspapers through June 15.  I got through June 10, so it was something.

2. Clear out the expired coupons. Did it in my coupon book but not the extras.

3. Focus on Dan's room.Nope.  This is so hard to do.

4. Publicize my October fundraiser. Yes!  Missed it?  Go check it out here.

5. Finish my phone cleanup and get rid of stuff I don't need. Continued on this, but still have more to do.

Not a bad week.  I did some things.  So what are my goals for this week???

October 2014 Niemann Pick Disease Fundraiser

The first year I joined the Niemann Pick family was the same year we diagnosed and lost Dan.  And with some coincidence, the fundraiser the National Niemann-Pick Disease Foundation was doing that year ended on the date of his death - 11-11-11.

Since then, I have held a fundraiser every fall - sometime between October and December - between Niemann-Pick awareness month and his birthday.

This year I am sponsoring an online only fundraiser.  It's called "Let's Nail NPC Research!"  This year funds are being donated to the NNPDF and Chase the Cure.

If you are on Facebook you can reach the event here.
If you are not on Facebook you can reach the party here.


What are Jamberry Nails?
Jamberry Nails are salon quality nail wraps that you apply in convenience of your home in less than 30 minutes. With over 300 designs to choose from, they are made in the USA with no harsh chemicals and are latex free. Wraps last up to 2 weeks on fingers and up to 6 weeks on toes. They cost a fraction of salon prices!

I created a special periwinkle ribbon wrap for October Awareness Month.  This wrap is only available from me, so if you are interested, please contact me.  You can use the contact form on the right side of this blog.

They are very easy to apply and remove with items you have at home: a hair dry, a pair of scissors, rubbing alcohol and some oil.  You can check out the application and removal process in the video below

Five Faces of Niemann Pick Disease - Week 3

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

Three children from the same family. All affected.

Tyler above, Katie and Faith below.

The Life of Dan - Eating

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.

This video is a bit long, but it is one of my all time favorites!  Here is Dan at about 20 months.  He is eating sherbert because the lactose in the milk made him uncomfortable.  We were never really able to determine if it was a lactose issue or a symptom of Niemann Pick Type C.

At the time of this video, we were still undiagnosed and had never heard of Niemann Pick Type C.

Five for Five - Oct 13

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Read through June 7. Done!

2. Finish the last rainbow baby post. Done!

3. Focus on Dan's room. Nope.

4. Finish my NPD postings. Done!

5. Do a phone cleanup and get rid of stuff I don't need. Partially done!

A really good week!  So what are my goals for this week???

Five Faces of Niemann Pick Disease - Week 2

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

Both Cody and Kayla have NPC

The Life of Dan - Age 2

For Niemann Pick Disease awareness month, I wanted to post a few videos.  Many people who read this blog never met Dan when he was "healthy" and many never met him at all.

This video was taken on the date in the video.  Dan was a few weeks shy of his second birthday.  We had undergone a lot of testing which didn't yield any results.  He remained undiagnosed for another 2 1/2 years.

 

 

 

So here is Dan when he was just about age 2.  Besides his speech, he seems pretty normal.  You can't really see it, but his abdomen is larger than usual.  That was his only obvious symptom of Niemann Pick Disease, Type C.

5 For Five - Oct 6

So what is 5 For Five? In the short form, it is 5 goals I want to achieve this week. Next week, I will report on my success (or failure).

Here were the goals from last week:

1. Finish those May newspapers.  I really need to get back on track with these. Done!

2. Finish the last rainbow baby post. Nope.

3. Focus on Dan's room. Nope.

4. Pre-plan my NPD posts for October. Half complete.

5. Start an evening routine with Shelby. Yes!

Ok, another bad week.  I really need to refocus.  So what are my goals for this week???

Five Faces of Niemann Pick Disease

It's October.  That means it is time for my annual postings about Niemann Pick Disease.  This year I will be highlighting different faces and families affected.  Every Friday you can expect to see these posts. 

Another mom has taken the time to put these images together.  If you wish to see all the images, you can click here.

How we have a happy and successful life

This post is part of the New American Dream Blog Tour which I am delighted to be a part of along with hundreds of inspiring bloggers. To learn more and join us, Click Here

Last week I wrote about finding what you think is a happy and successful life.  This week I am writing about our happy and successful life.

Everyone has a different definition of being happy and successful.  I initially thought being happy and successful meant working 40-50 hours a week and making lots of money.  My perspective changed when I got married and had kids.