Happy Thanksgiving!

Happy Thanksgiving from Shelby. Celebrating her first Thanksgiving.

Learn to Say No

Say Goodbye to Survival Mode Challenge – Day 1: Learn to Say No

If we want to say goodbye to survival mode, we need to make time for what really matters. This means we have to clear out the nonessential commitments. The fastest way to do this? Learn to say no.

Today’s Challenge
Sit down somewhere quiet and compose a to-do list for tomorrow. Include everything on your plate, from the moment you wake up until you go to bed. When you’re finished, force yourself to immediately eliminate three items from your list. Just cross them out.

This is not a mind trick to make you feel more productive than you really are. Instead, it’s a way to help you start learning to evaluate your activities and commitments. Choose three items and get rid of them.



You can sign up for the Challenge at the link in the picture.

***********************

Ok, so I'm starting the Challenge, just like I told you I would on Monday. But I am modifying it a bit. I'm going to work on an item a week, instead of an item a day.

I've started two lists for the next few days: one for work and one for home. Some of the home list is on my weekly 5 For Five post.  I will make another home list for the weekend and then two more lists for early next week. I will keep you updated on how I do.

5 for Five - Nov 24

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Read 10 newspapers. Nope.
2. Get Shelby's Christmas list together for the family. Yes! And I've provided them with the online links too!
3. Read some of the new book I am reviewing.  This has been most of my week, so I didn't get the newspapers read.  The book is Say Goodbye to Survival Mode by Crystal Paine.  I wrote about it here.
4. Do something fun for me. I don't think I did this either.
5. Keep up with the paper clutter. I really didn't see any, so I must have kept up with it.

So this was not a good week at all!  Here's to next week and using some of the ideas from Crystal's book to help.


So what are the plans for next week?
1. Do Crystal's 7-Day Challenge
2. Finish reading the preview copy of the book.
3. Read 2 newspapers a day.
4. Finish decorating Shelby's room.
5. Write at least 3 more blog posts this week.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

Say Goodbye to Survival Mode

I am previewing a new book: Say Goodbye to Survival Mode by Crystal Paine



The book will be available to buy on January 21, but you can pre-order it now at the above link.  In addition, there is a 7-day Challenge to help start you start getting out of "Survival Mode"


I can tell you that the items in the 7-day challenge are in the book and are simple things to do.  Sign up for the 7-day challenge and you will get an email every day with that particular day's challenge.  Even if you don't want to do the challenge this week, save the emails are start them after Thanksgiving.

Dan's Photos

I made another book of photos of Dan.  This is from 18-24 months.

Click here to view this photo book larger

Turn your favorite photos into a photo book at Shutterfly.com.

Fundraiser Results

During the month of October, which is National Niemann-Pick Disease Awareness Month, I held two fundraisers.  I want to say a big Thank You to everyone who helped contribute to these.

The first was an online monetary donation at Dedicating Dollars.

The second was an Origami Owl fundraiser.

I had a wonderful turnout for the actual fundraiser and a bunch of people ordered items from the website. I think many people will be getting some wonderful Christmas presents! And from all the ordering, we had over $190 go for research.

I know there were others who sent donations directly to the NNPDF, either through checks in the mail or through online donations. For you, thank you too!

Remember at any time anyone can do a fundraiser - it doesn't just have to be in October.

Another good grocery trip

We all need to eat and we all need to get groceries.  There are a couple of stores that deliver, but I actually enjoy going grocery shopping.  Kind of weird, I know.

But I've had a few good weeks of grocery shopping.  I usually don't go shopping on Sunday because it is usually really, really crowded, but there were a few items on sale this week that I thought may be out of stock by the time I got there later in the week.

So off I went, with Shelby tucked into her Boba/Sleepy wrap and perfectly content to wander the store with me.  It wasn't as crowded as I expected, but it wasn't as empty as I'm used to.  In the end I saved about 50%.  Here is how I did it.

Whole chicken, cut up - $6.52 but had a $3 meat sale coupon on it because it had to be sold by tomorrow (straight into the freezer)
London Broil steak - $6.79 with a $3 meat sale coupon
Bottom Round stead - $10.96 with a $3 meat sale coupon
Hatfield Precooked Ham (3 lbs) - $9.99 on sale (dinner for that night)
Chicken thighs - $4.03 with a $2 meat sale coupon
Chicken drumsticks - $4.46 with a $2 meat sale coupon
Butterball turkey - $14.36 (on sale for $0.99/lb) used $3 coupon with crescent roll and mashed potato purchases
     3 Pillsbury crescent rolls - $2 each on sale with a coupon for $0.50/3 (doubled)
     2 Betty Crocker mashed potatoes - $0.97 each on sale with a coupon for $0.40/2 (doubled)
Pop up turkey timers $1.99 (great to have in the house and this time of year is the only time I can find them)
Yogi Woman's Nursing Tea $4.99 (impulse purchase)
Idahoan Mashed Potatoes - $2.69 with coupon for $1.69 = $1
6 Coffee-mate 32 oz coffee creamers - $2.50 each. Used $1.50/3 and $1/3 coupons
4 store brand 4oz can of mushroom pieces - $0.69 each
3 store brand 8oz can of mushroom pieces - $1.59 each
Kraft Recipe Makers (a meal starter) - $2.99 on sale. Used a digital store coupon for $1 off
Deli ham -$7.20 ($6.99/pound)
Deli American cheese - $5.19 ($4.99/pound)
     (This store allows you to make your deli "order" at a kiosk and then pick it up when it is ready.  It is amazing how many people I saw standing by the deli counter wondering who was next.  I ordered my ham and cheese and then went and did my shopping.  A text message told me it was done and I could pick it up.  So much easier!!!)
Friendly's French Vanilla ice cream - $1.99 on sale (used a store coupon for $1 off ice cream and pie)
    2 Mrs. Smith's Apple Pies - $1.99 each on sale. Used $1/1 and $0.75/1 (doubled)
3 Dole Salad Kits at $2.99 each - used $1 store salad coupon
Store brand potato chips - $2 used a $1.75 digital store coupon (yes chips for $0.25!)
Yams - $0.89 per pound - with coupon became $0.39 per pound
Orange tic tacs (impulse purchase) $3.19
Single bag of M&Ms (needed my chocolate fix) - on sale for $1.25

I used the $10.50 from my last shopping trip and a $6.00 coupon if the order was over $100.  When all was done, I paid $94.27 and saved $89.94!  I don't think this was too bad considering I got a bunch of meat (for which there are almost no coupons!)

I will also get $4.00 from SavingStar ($3.00 for the turkey, $0.50 for the crescent rolls and $0.50 for the mashed potatoes).

5 for Five - Nov 18

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Finish the April papers.  Done!
2. Get Shelby's Christmas ideas on a list. Nope.
3. Get a grocery list put together before leaving for the store. I know I forgot some things last week, but I didn't do too bad with the sales. I put the coupons together on Friday, got a list together Saturday, but never got out.  I did go out Sunday (with a list in my head!) and did pretty good.
4. Finish decorating Shelby's room. Curtains are up and the vinyl wall decorations are flattening, so progress is being made.
5. Keep up with the clutter. Somewhat. It doesn't seem as bad this week, until I got to the weekend.


So what are the plans for next week?
1. Read 10 newspapers.
2. Get Shelby's Christmas list together for the family.
3. Read some of the new book I am reviewing.  More to come on this soon.
4. Do something fun for me.
5. Keep up with the paper clutter.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

An incredible look at NPC research

On November 14, the Wall Street Journal published online a special report TRIALS: A Desperate Fight to Save Kids & Change Science about the long and winding journey of research into Niemann Pick Type C and the use of cyclodextrin as a possible treatment.  The November 15th paper had a shortened version of this special report.

Here is the "teaser" video:
A group of parents and scientists is seeking a treatment for a fatal genetic disease that strikes children. Their collaboration is pushing the boundaries of medical research. A preview of a WSJ Special Project. Music by Dexter Britain http://on.wsj.com/19nKvDc



The author, Amy, spent 6 years following several families and capturing the highs and lows of living with and treating NPC.  Amy was at the NNPDF conference in Baltimore in August and was able to speak to many families first hand.

Yes, the book is long (10 chapters) and it is quite interactive with videos and comment areas.  But it is so worth the read to understand NPC and how research in general takes its twists and turns in developing a drug to treat a rare disease (any rare disease).

Please take the time to read the story or watch the videos.  Please share them with others.  There may be one researcher, somewhere, who has a missing link to help all these families have better tomorrows.  By sharing, you also spread awareness of this rare disease and more people (doctors included) become familiar with it and can more quickly diagnose it when they see it.

Wall Street Journal Article: http://projects.wsj.com/trials/?mod=e2fb
PDF E-book: http://projects.wsj.com/trials_ebooks/TRIALS.pdf
EPub E-book (Apple iReader and other readers): http://projects.wsj.com/trials_ebooks/TrialsBook.epub
Kindle (text only): http://projects.wsj.com/trials_ebooks/TrialsBook.mobi


Dillon Papier's story: http://youtu.be/BkWvTLhh0_0





The Marella Family's story: http://youtu.be/ra-nZKmENmQ





The Hempel Family: http://youtu.be/MgMVwSDq4QQ





The use of the robot in research: http://youtu.be/ra0e97Wiqds

Caregiver Support and Resource Webinar

Caregiver Support and Resource Webinar

Global Genes will be hosting a series of free webinars in 2013 geared towards educating and empowering our RARE community.

Caregivers Webinar: Taking Care of Yourself While Taking Care of Your Loved Ones
 
November 21, 2013 – 11:00 am PT/12 noon MT/1:00 pm CT/2:00 pm ET (90 minutes)

Register today!

In celebration of Caregiver Month (November), this session will explore the psycho/social aspects of caregiving and provide resources, ideas, and practical advice on how to strike a balance between caring for others and caring for yourself.

Panelists:

• David Milam, Caregiver Spouse to a wife with Pompe Disease
• Gloria Klaesges, Caregiver, Parent to a child with Hurler’s Syndrome, Family Ties Massachusetts
• Kathleen Coolidge, LICSW, Associate Director, US Patient Advocacy, Genzyme, a Sanofi Company
• Lisa Winstel, Caregiver Action Network

Moderator: John Schall, Caregiver Action Network 






Sponsored by:

Thoughtful quote for today

I came across this interesting quote today:

"Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't."
-- Richard Bach,
American writer

There are so many reasons to be alive. To smell the flowers, to see the sunsets, to be loved and to love others. But what is your personal mission in life?

Is it to annoy others? Is it to make every small problem (molehill) into a major problem (mountain)? Or is it to help others? Is it to advance a cause? Is is to be there for others?

Think about your personal mission in life. Is it something you want to change about yourself? Are you happy with what you are doing?

Whatever your mission is, you have everyday of your life to do it, because your mission isn't finished while you are alive.


*********************


I don't know if I had a mission in my life - except to be a good person and to love and be loved. All of that changed when I had Dan.

All of a sudden, he became so much of my life - so much of a reason to live my life for him. Things I did, I tried to do for his well-being. When he got sick, really sick, I wanted to be by his side every minute of every day. I went to work because I had to, not because I wanted to. And when he died, I found my mission.

I needed to tell the world about my son - the fighter, the one who endured pain and challenges that I never knew about because he couldn't tell us. The one who got the "short end of the stick" in the medical world because we had doctors who didn't know what they were looking at, who didn't listen to us when we told them we had concerns, who didn't believe us when we identified specific medical issues.

Now it wasn't all the doctors, and once we finally made our presence known by fighting back against them, we were able to provide him some comfort. But he still endured more than he ever should have, more pain than a child should have to endure.

So my mission became to help spare other children that pain and help other families find ways to cope with losing a child.

I sought out the NNPDF to find what I could do to help. I'm now the Treasurer. I was talking with the doctors and researchers (some international) 3 days before Shelby was born.

I am open about losing a child to a rare disease. I am not afraid to show my pain and shed my tears in that grief process. I hope I have brought the subject of childhood death into the "open" and made it more of a discussion.

I have discovered that I want to spend more time with Shelby and if I could, I would be a stay-at-home mom. But that is still a dream, as food, shelter, and medical insurance are important.

5 for Five - Nov 11

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Read some more newspapers. I am still reading April, but once I start, I can usually get a few done at a time.  Yeah!  I got about 6 read.
2. Have some quiet time. I did get some.
3. Balance the checkbook. I did do this.
4. Start a wish list for Shelby for Christmas. I have some ideas, but haven't gotten them put on a list yet.
5. Tackle the paper clutter again. Yup.  I got the table cleared off again.


So what are the plans for next week?
1. Finish the April papers.
2. Get Shelby's Christmas ideas on a list.
3. Get a grocery list put together before leaving for the store. I know I forgot some things last week, but I didn't do too bad with the sales.
4. Finish decorating Shelby's room.
5. Keep up with the clutter.

Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

Big Brother is Watching

Today marks two years since Dan became an angel. 


The other night Shelby was playing on Daddy's lap looking at her feet and trying to reach for them.  She is 3 months old.  Daddy was making up songs about feet and toes and making her smile and giggle.
 

Out of nowhere, Dan's green frog starts singing a song - "You can find your foot, give it a wiggle.  You can touch your toes, it will make you giggle. (laughs)  You can find your foot, give it a wiggle.  You can touch your toes, it will make you giggle. (laughs) Oh yeah!"

 

I know that Dan, as big brother, is watching over Shelby, the little sister.

Groceries for less

I usually don't post my grocery shopping trips, but I had to share this one. All of these deals ended yesterday, which is when I went shopping. Thanks to I Am That Lady and The Saratoga Saver for coupon links and matchups.

• 6 boxes of Ronzoni pasta (Smart Taste and Garden Delight) on sale for $6 ($1 each).  I used two $1/1 coupons and 2 $1/2 coupons.
• Cracker Barrell brick of cheese for $3.29 (not on sale, but used a $0.75 Catalina coupon)
• 4 Dole fruit bowls on sale for $2.50 each. Used two $0.50/2 coupons.
• 2 Hood sour cream for $2.19 each (not on sale, but used a $0.75 store coupon on each)
• 2 McCormick turkey gravy on sale for $1 each
• 2 McCormick brown gravy on sale for $0.75 each
• 2 Campbell's Homestyle Soup on sale for $1.50 each. I used two $1/1 coupons.
• 2 bags Lay's Potato Chips on sale for $2 each.  I had an in ad coupon for $1 off and an electronic coupon for another $1 off.
• 8 Banquet brown and serve breakfast sausage on sale for $0.77 each.
• 7 Campbell's Gravy cans on sale for $0.60 each
• 3 Swanson Broth cans on sale for $0.60 each
• 2 Sunny D on sale for $1 each.  I used two $1/1 coupons.
• 6 Campbell's Chunky soup on sale for $1.50 each.  I used $1 coupon and a $0.60 coupons.
• 15 Campbell's condensed soups (including some cream soups and some "Great for Cooking" soups) on sale for $1 each.  I used three $0.40 coupons.
• 2 Gerber Puffs (baby food) on sale for $2 each. I used $1/2 coupon
• 2 bags of Kibbles n Bits dog food (16 lb) on sale for $9.99 each.  I used two $1.50/1 coupons

I used $4.50 in Catalina savings from prior trips and had six reusable bags (at $0.03 each).  This store automatically doubles coupons under $1 and offered the doubling of two $1 coupons. 

Total paid was $69.18.  Total saved was $88.46!

This store also offered Catalina savings for purchasing certain items. I earned $10.50 in savings coupons on each bag of dog food, the broth/gravy, the baby food, the fruit bowls, the soup, the pasta, and the gravy packets/Sunny D/condensed soups.

Halloween

I had to share my Snow White for Halloween.  We didn't go out trick or treating this year, but I'm sure she will enjoy it next year.

5 for Five - Nov 4

So what is 5 For Five? In the short form, it is 5 goals you want to achieve this week. Next week, I will report on my success (or failure). Jenn does a better job of explaining it here.

Here were last week's goals:
1. Read some newspapers. I read 2. Not great. But something.
2. Have some quiet time. Being sick lead to some quiet time with just the three of us on Wednesday and Thursday evenings.
3. Finish a training class. Done!
4. Finish a Kindle book I am writing a review on. Done! See review here.
5. Balance the checkbook. Nope. But I paid the bills and have a general knowledge of what is available and what still needs to be paid.


So what are the plans for next week?
1. Read some more newspapers. I am still reading April, but once I start, I can usually get a few done at a time.
2. Have some quiet time.
3. Balance the checkbook.
4. Start a wish list for Shelby for Christmas.
5. Tackle the paper clutter again.


Anyone want to join me in making some goals? How did everyone do with their goals from last week? So what are you planning for this week? Feel free to post them below if you want.

Book Review: Sunshine After the Storm

I was given the opportunity to review  Sunshine After the Storm: A Survival Guide for the Grieving Mother.  I was provided a Kindle copy of this book for purposes of this review.  The opinions expressed are entirely mine.

Sunshine After the Storm is a collection of items written by mothers finding their way after the loss of a baby or child.  Some of these items are poems, others are a few paragraphs, and others are a few pages.  Each item in some way shows how that mother dealt with the loss of their baby or child.

Many of the contributors (but not all) had miscarriages or still births, ranging in time from a few weeks to full term.  Others lost babies to Twin-to-Twin Transmission Syndrome.  I had the ability to hold Daniel and nurture him for almost 5 years.  Many of these women never had that chance.

I will always be a grieving mom, just like all these women. Some of them have other children (both older and younger than the one they lost), but that doesn't take away the grief and feelings of loss - not just of the child but of what the child would become.

There is also a chapter on grieving dads.  Men grieve very differently than women.  Most of that is due to societal expectations. Having this section provides some helpful insight for women.

The book is broken down into chapters (topics) and inside the chapters are scenarios (the written items).  The chapters and the scenarios do not need to be read in any particular order, although I did read it from beginning to end in order to write this review.

There were many times that I had tears streaming down my face as I read some of the scenarios.  The emotions that flow from the words are powerful. Although I have never experienced a miscarriage or a still birth, I learned from these women that the loss is just as powerful and the feelings and emotions associated with their loss are just the same as those of a mother who has lost a child at an older age.

The scenarios are not just for those who are grieving.  There are lessons to be learned for those who have not directly experienced the loss - like friends or relatives.

I especially liked the list of resources at the end of the book.   There are many great resources listed, including support groups and entities created by some of the contributors to the book.  There is also a "Grief To-Do List" for the grieving mother to provide to others.  The items on the checklist are simple things, but mean lot to many who are grieving.

I still have days where my grief is more present than other days.  Knowing that other moms, for whatever reason, are also feeling the grief months and years later is comforting.  When I need that support from other moms, I know that these women are never further from me than my Kindle.

Sunshine After the Storm: A Survival Guide for the Grieving Mother is available on Amazon.  You can read more about the book and the contributors at the book's website Sunshine After the Storm.

Summary of October Niemann Pick Disease Awareness Posts

October was Niemann-Pick Disease Awareness Month.  Here is a recap of my posts:

Angels

Another NPC Angel

An NPC Angel

 Niemann Pick Angel

The Face Of Niemann-Pick Type A

Research 

 Type B Clinical Update

Type C Clinical Update

Research Team for Niemann-Pick Types A and B

Research is Hope of the Future

Drug Development and Regulatory Approval

 

Awareness

How to Spread Awareness Year Round

Awareness Videos 

Niemann-Pick Article in Neurology Now

A Rainbow of Colors

Kids Awareness Contest

Show Your Support for Niemann-Pick

Who we are

Adult Onset Niemann-Pick Type C

Living With Niemann-PickType B

Where We Were And Where We Are

Siblings Are Affected Too

The International World