Saturday, August 30, 2014

The End of an Era

If you have spent any time in the New York Capital Region, you have heard about Hoffman's Playland.  It is an amusement park designed exclusively for young kids.  It is very affordable and geared toward family fun.

This is their last year in operation after 50+ years.  So we took Shelby down to enjoy some of the fun.

Wednesday, August 27, 2014

What happens if you can't eat?

Have you ever thought about what you would do if you couldn't eat?  I'm not talking just about chewing, I'm talking about getting any sort of nutrients in your mouth.

Not being able to eat safely is a big problem for children with Niemann Pick Disease.  As the disease takes it's toll, the muscles weaken which makes swallowing difficult.  Eventually, food and liquids start entering the lungs and causing pneumonia.

There are various stages of swallowing difficulty.  Some people can do well with small pieces, others need pureed foods (like baby food) and others can do thickened liquids but not thin (like milkshakes but not water).

And then there are those who can't do any of those.

Monday, August 25, 2014

5 For Five - Aug 25

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 until April 30 (10 calendar days and 11 newspapers). Done!
2. Remove 3 "adult" items from Dan's room. Done! And medical supplies were provided to others who could use them.
3. Re-organize Shelby's toys. Started to do this.
4. Pre-write several blog posts. Nope.
5. Put my Jamberry nails on. Done! See the picture.


So this was a 3.5 out of 5.  Some of these are works in progress. But the one I did do was the most important.  I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Thursday, August 21, 2014

Can NPC actually SAVE a life?

These past few weeks there has been extensive media coverage of the Ebola outbreak and the 2 Americans who were infected and brought to Emery University for treatment.

What isn't being covered as much is the potential research into Ebola.  The CBS news article linked below made its rounds through the Niemann Pick community because it explains how Ebola transfers from individual to individual in fairly non-medical terms.



So why am I writing about it?  I've copied the important paragraph below:

Monday, August 18, 2014

Are you tired of spending so much on groceries?

I've been couponing for quite some time and have had some wonderful successes.  You can see my posts here and  here.

We are currently spending about $100-$125 a week on groceries for 2 adults and a toddler. But I am always looking for better ways to save money.   Just last week I called and cut my cable bill by about $30 a month!

And TODAY (8/19/14), Crystal Paine from Money Saving Mom is re-launching Grocery University!  She will have special pricing beginning at 5am Central Time!

Are you tired of spending so much on groceries?

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You don’t have to bust your budget to feed your family! Enter Grocery University: a 2 hour, 19 minute audio course that will teach you everything you need to know about making the most of your grocery budget, regardless of whether you’re new to bargain shopping or have been a super-shopper for years.

5 For Five - Aug 18

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 until April 26 (14 calendar days and 16 newspapers). Nope.  I read through April 20, which is 8 days and 10 newspapers.
2. Remove 3 "adult" items from Dan's room. Yes. Slowing cleaning out the stuff I don't want Shelby playing with.
3. Re-organize Shelby's toys. Nope.
4. Pre-write several blog posts. Done!
5. Call cable to reduce the bill. Done! Saving about $33 a month.


So this was a 3.5 out of 5.  Definitely not good. But the one I did do was the most important.  I'm focusing on small goals to start feeling productive again.

So what are my goals for this week???

Friday, August 15, 2014

A Wonderful Birthday

Can you believe it has been a year since my rainbow baby Shelby was born?  It's amazing how quickly time has gone.  Ms. Shelby is all crawling over the house, getting into things and standing on our own.

We had a nice quiet actual birthday celebration.

 With mom and dad