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.