5 for Five - Week 17

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button below or see my blog hop page.

Last week's goals:
1. Read 10 newspapers.
         Done!  Read over 10!
2. Write 4 blog posts this week.
         Done! See here, here, here and here.
3. Get caught up on 2 of my blogs this week.
         Nope, so it goes on the list this week
4. Be in bed by 11pm Monday to Thursday this week (I have another busy week, so this is questionable)
         Did it 2 of 4 days, so not too bad.
5. Keep eating the fruit and drinking the water.
         Slacked off a bit, so need to be more aware of it.

Not too bad this week.  I'm aiming for completing all 5 tasks next week!

This week's goals:

1. Read 10 newspapers.

2. Write 4 blog posts.

3. Get caught up on 2 blogs.

4. Do some decluttering around the house.

5. Find the farmer's markets in my area.

Ok - so here is some background on these....

1. We all have our quirks.  One of mine is reading newspapers in consecutive order, no matter how old they are.  When Dan was in the hospital for a month in mid-2011, I got behind.  After he died, I got further behind.  But I have been slowly chipping away at them.  I get 8 newspapers a week (one daily and 2 on Sunday's).  I am in mid-November 2012 now.

2. I want to write more blog posts, so by putting the goal here, it makes me accountable.

3. I am subscribed to quite a few blogs of interest to me - others that participate in the blog hops, other Niemann-Pick families.  I've been slacking on keeping up with the reading of the entries.  And with Google Reader being discontinued, I want to make sure I am all caught up on all of them before it goes away!

4. We have been so busy the past few weeks, that some of the paper clutter has started to accumulate again.  Time to get organized!

5. The company that was delivering fresh produce to my doorstep every week has stopped providing that service.  But since the summer is here, I know the farmer's markets will be starting.  I want to put a list together of locations/dates/times so I know where I can find fresh produce this summer.

Happy Birthday to my Husband

I made this photo book for my husband for his birthday.

Click here to view this photo book larger

Start your own Shutterfly Photo Book today.

Remembering Little Ones

This song came out shortly before Dan died and there were many family members who we thought of for which it would apply for.  But after Dan died, it became more important....




And here are the lyrics.


Another mom posted the lyrics to a Martina McBride song too

Ducks for Bucks - a fun way to help

What is Ducks for Bucks?

Breann's Story

Ducks for Bucks is a 501(c)(3) non-profit organization that was created in memory of Breann Chavez who passed away at the age of three from Niemann-Pick Disease, type C (NPD-C).  All money raised goes directly into the hands of families caring for children with NP-C, so they can personally apply it towards their greatest need at the time.

Our goal is to raise money for families who are still in the fight against this terrible disease.  Families faced with NP-C are looking at a very short amount of time with their child.  We would like to help them alleviate some of their financial burden so they can focus on enjoying the few years they have with their child.

Over the past few year Ducks for Bucks has had the privilege of helping these families with equipment needs, medical bills, and sadly, even funeral expenses. We also help provide travel expenses, allowing families to get to the Annual Niemann-Pick Disease Family Conference.  Here, families can network with other families and share ideas for caring for their terminally ill children.  With all the different complications associated with this disease, and because of the lack of experience most doctos have with this rare disease, this service becomes a life line for many families.

Ducks for Bucks also works together with the National Niemann-Pick Disease Foundation to help provide an  Equipment Exchange Program for NPD families. This program allows families to share costly equipment that they no longer need with other families who can benefit from the equipment.  http://www.nnpdf.org/familyservices_09.html

 How to Help?

The first Saturday of every June, we have our Annual Family Fun Day.  This is a day where we raise both awareness and money for our families.  It is held at Wines of the San Juan in Turley, NM (30 miles east of Farmington)  from 12-5pm.   There is live music, wine tasting, food, carnival games, horse riding, a silent auction, raffles, and everyone's favorite -The Dainty Duck Dash.  This rubber duck race is a local favorite with a $1000 first place prize.  We are always looking for sponsors to make this event possible.  If you would like to be a sponsor for this event or would like to pass the information on to you someone, you can download this year's brochure.


2013 Bucks for Bucks Brochure

All sponsors are fully recognized on day of the event.  If you are interested please let us know right away so we can be sure to recognize you on the posters and shirts.   You may also contact us by email

lisa@ducksforbucks.org
alex@ducksforbucks.org

   Buy a Duck - The Dainty Duck Dash is a rubber duck race that takes place at our Annual Family Fun Awareness Day.  Ducks are $5 each.  Ducks race in heats of 250 ducks at a time.  Winner of each heat qualifies for the final race.

1st place - $1000
2nd place - $500
3rd place $250 

 For More information on Ducks for Bucks, see their website at www.ducksforbucks.org

 

An Angel

Riley Gene Robbins
09/15/2010 ~ 04/22/2013

Riley Gene Robbins (NPA)

Riley Robbins, precious baby boy of Chris and Lori Robbins, lost his battle with Niemann-Pick Disease, Type A on Monday, April 22nd, 2013.

It is difficult to put into words the deep sadness and heartbreak due to the loss of such a previous little one. Riley will be profoundly missed, not only by his family, but all those he touched in his short time with us.

An obituary where messages can be left for the family can be found, Here

However hard it is to lose one child, this family has lost two to Niemann-Pick, Type A.  You can read more about Riley, his sister Faith, and the rest of the family on Lori's blog.

5 for Five - Week 16

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button below or see my blog hop page.

Last week's goals:

1. Back to those newspapers.

           Done!  Read 10!

2. Write 3 blog posts

           Done!  See here, here and here.

3. Keep the water and fruit going at work.

           Did it 2 of 4 days, can still work on it.

4. Be in bed by 10:30pm Mon-Thursday (we have a busy week this week, so hope its doable)

           Nope didn't happen.  I knew this one was a stretch....

5. Add the extra water and fruit to my days home.

            Nope, need to work on this one too.

Ok, so 2 of 5...need some encouragement....

This week's goals:

1. Read 10 newspapers.
2. Write 4 blog posts this week.
3. Get caught up on 2 of my blogs this week.
4. Be in bed by 11pm Monday to Thursday this week (I have another busy week, so this is questionable)
5. Keep eating the fruit and drinking the water.

An honor (and lots of work) for my husband

If you go looking back through the posts on this blog, there are not many directly related to my family.  This isn't really intentional, but to us, we just live our day to day life with nothing really special.  But this is special.

As of April 1, my dear husband became the Exalted Ruler of our local Elks Lodge.  What does that mean?  Well, lots of work and lots of meetings...  His term runs until March 31, 2014.  The Exalted Ruler is the "leader" of the local lodge, similar to the Commander of a local American Legion or VFW post.

Congratulations honey!  I will be standing right by your side through this journey.

But here is a bit of background (from www.elks.org):

Elks Care, Elks Share. Are YOU an Elk?

Elks Lodges bring so much more to their communities than just a building, golf course or pool. They are places where neighbors come together, families share meals, and children grow up.

Elks invest in their communities through programs that help children grow up healthy and drug-free, by undertaking projects that address unmet need, and by honoring the service and sacrifice of our veterans.

We are...

• A fraternal order with nearly a million members and a 141-year history.
• A network of more than 2000 lodges in communities all over the country.
• A generous charitable foundation that each year gives millions in scholarships, an inspiration to youth, a friend to veterans and more.

Our Mission

To inculcate the principles of Charity, Justice, Brotherly Love and Fidelity; to recognize a belief in God; to promote the welfare and enhance the happiness of its Members; to quicken the spirit of American patriotism; to cultivate good fellowship; to perpetuate itself as a fraternal organization, and to provide for its government, the Benevolent and Protective Order of Elks of the United States of America will serve the people and communities through benevolent programs, demonstrating that Elks Care and Elks Share.

Origin

The Elks organization was founded in New York City on February 16, 1868 under the name "Jolly Corks" by 15 actors, entertainers and others associated with the theater. In ensuing years, membership expanded to other professions.

Purposes

This Fraternal Order was founded "To promote and practice the four cardinal virtues of Charity, Justice, Brotherly Love and Fidelity; to promote the welfare and enhance the happiness of its members; to quicken the spirit of American Patriotism and cultivate good fellowship."

Membership

The Order is a non-political, non-sectarian and strictly American fraternity. Proposal for membership in the Order is only by invitation of a member in good standing. To be accepted as a member, one must be an American citizen, believe in God, be of good moral character and be at least 21 years old.

What We Do

The Order spends more than $80,000,000 every year for benevolent, educational and patriotic community-minded programs in such fields as benefitting physically handicapped children, sponsoring Elks National Foundation scholarships, scouting, athletic teams, veterans' works, a national "Hoop Shoot" free-throw contest involving more than 3 million children, physical and occupational therapy programs and patriotic programs.

The youth of our country have always been important to the Order. It is for this reason the Elks Drug Awareness Education Program was launched to warn primary grade students and their parents of the dangers in drug use. Additionally, every lodge observes June 14th as Flag Day, a tradition which the Elks began in 1907 and was later adopted by the Congress as an official observance.

Undiagnosed Day

I knew this was coming, and still missed it, but I wanted to talk about it anyway....









And here is a video too







We spent just about 4 1/2 years undiagnosed with Dan.  There were times we wanted to give up and times we did.  When we started our journey in 2006/2007 genetic mutation testing was not often performed and required lots and lots of paperwork.  The tests have gotten better over the years, and more conditions are being "discovered".  But we still do not know much about these "new" conditions - causes, treatments, cures.  There is still alot of work to be done.

Although it is a few days late, please take a moment to think about those with kids who are struggling to find answers.  Before you judge their actions or question their motives or intentions, take a minute and truly think about what you would do if you were in that situation.

Shock and Grief All Over Again

As I'm sure all of you know, there were several explosions near the end of the Boston Marathon yesterday and several were killed and many more injured.

I wanted to share a blog post from Children's Hospital Boston, which they posted very shortly after the incidents.  Like all the other local hospitals, I'm sure they quickly sprang into action, helping those who needed the help.

Talking to Children After Tragedy

5 for Five - Week 15

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button below or see my blog hop page.

Last week's goals:

1. Get the decluttering done!

         Making progress on this, but not complete...but then again, is it ever?

2. Write 3 blog posts this week.

          Done!  Here, here and here

3. Read 10 newspapers.

           Oops...nope

4. Continue the water drinking and fruit eating at work.

            Did this all 4 days at work!

5. Use my juicer.

           Almost but not quite

Well, the ones I did, I aced...the ones I didn't...well....

This week's goals:

1. Back to those newspapes

2. Write 3 blog posts

3. Keep the water and fruit going at work.

4. Be in bed by 10:30pm Mon-Thursday (we have a busy week this week, so hope its doable)

5. Add the extra water and fruit to my days home.

Some of these are starting to sound like broken records, I know.  But it takes 7 weeks to form a new habit, so hopefully some of them can come off the list soon!

17 Months

Yesterday was 17 months since we lost Dan. 

Over the past few days two other grieving mothers have written amazing blog posts about what it is like - moving forward, but not quite.

So here is Lorna's post.  Lorna lost her daughter Naomi to Niemann-Pick Type C on July 6, 2012 at the age of 9.

Here is Chelsea's post.  Chelsea lost her son Trek to Niemann-Pick Type A on June 21, 2012 at the age of 14 1/2 months.

Please take a minute and read these. 

Rare Disease Webinar 5/1/13 - Affordable Care Act changes and Rare Diseases

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

Essential Health Benefits: How this provision under the Affordable Care Act could affect access to rare disease therapies and treatments

May 1, 2013 – 11:00 am Pacific Time
Register today!

Do you know how the recently passed Affordable Care Act (often referred to as Obamacare) affects you and your family? Do you understand how an important segment in this ACA called “Essential Health Benefits” may alter your access to the therapies and treatment you need? At this webinar, our panelists will explain the changes that are about to be put into effect, and more importantly, how these changes will affect our entire rare disease community.

Several issues specific to the rare community will be discussed including:
* Will these changes in healthcare ensure that patients are still able to meet with an adequate number of specialists?
* How will the Health and Human Service Department (HSS) determine which medical services are unnecessary and inappropriate and which are necessary and high-quality?
* How will HHS ensure that explicit details on prescription drug coverage remain readily available for patients, so they can make informed decisions while selecting a healthcare plan?
* Most importantly, how will you know with certainty which health plan is best for you after all of these healthcare changes are put into effect?

Please join us on May 1st, 2013 at 11 am Pacific Time to learn more about this important provision of the Affordable Care Act and how it could potentially affect you and your family. We will also discuss issues unique to the rare disease community that may seem unclear since the HHS final rule.

Panelists:

• Joel White, President, Council for Affordable Health Coverage.
• Eric Gascho, Director of Government Affairs, National Health Council.
• Kimberly Beer, Director of Government Relations, Arthritis Foundation

NP Community Activities

I want to write about a couple of activities the Niemann-Pick Disease Community (and others) are participating in.


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The first is the Boston Marathon on April 15.  One of the teams of runners is running for Rare Diseases.  One of the runners is honoring angel Wylder Laffoon, who had Type A.

His mother Shannon wrote an awesome blog post about how others can help by showing their Warrior paint to encourage the Rare Disease team.  This is something simple and fun to do.  Shannon would like pictures of all those who are in Warrior paint, so see her blog for the address.

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A woman who has Type B, Anne O'Connor-Smith, is participating in a 1/2 Ironman and has requested a $250 matching donation from the local sponsor, the Community Foundation of Brevard. To contribute to the match, please go to the NNPDF donation page and note that any donation is in Honor of Anne O'Connor-Smith, Type B.


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Registration is open for the Erin Roberts Memorial Road Race 5K to be held in Hanover, MA on June 15.  Registration is here.

Erin Arline Roberts always had a sweet smile for everyone that she met. If you asked Erin how she was doing, her reply would be “Awesome”. At the age of 16, Erin was diagnosed with a fatal genetic disorder…Niemann-Pick Type C. To date, there is not a cure for this horrific disease. Erin died at the age of 24 from NPC at home among family and friends.

Please sign up to run or walk or make a donation to raise money for research to find a cure for this horrific disease. 


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To see all the current events and fundraisers, please go to the NNPDF Fundraiser Page.

5 For Five - Week 14

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:
1. Finish the decluttering on the one section that still needs to be done.
          Made some progress, but not complete
2. Write 3 blog posts this week.
           Done!  See here, here, and here.
3. Read 10 newspapers.
           Read 2.  Oops.
4. Drink one water bottle each day at work.
           Did this 3 of 4 days this week.
5. Eat 2 fruits each day.
           Also did this 3 days this week.

Not too bad, but still some areas of improvement.

This week's goals:

1. Get the decluttering done!

2. Write 3 blog posts this week.

3. Read 10 newspapers.

4. Continue the water drinking and fruit eating at work.

5. Use my juicer.

Some of these are starting to sound like broken records, I know.  But it takes 7 weeks to form a new habit, so hopefully some of them can come off the list soon!

Another angel

Please pray for the family of Lily. Precious Lily passed away this past Easter Sunday from Niemann-Pick Disease Type A. Her family is also from Canada.  Lily was 3.  Her obituary is here.








"Our beautiful daughter Lily lost her battle to NPD on Easter Sunday. She left us in her sleep, the best possible way, with no suffering."

Please find more detail about Lily Anna on the foundation's web site at:
http://www.nnpdf.org/NewsLinePage2012.html  

Here is a beautiful quote: "There is no foot so small that it cannot leave an imprint on this world."

Whos records are they?

Many people don't realize that they can inspect (and in some cases copy) their own medical records.  Providers are required to provide access for inspection free of charge, but can charge to make copies.  If there is an error in the record, you are also able to correct such error and the provider is required to accept such a correction.

This is especially important when you have someone with a complicated medical history.

On our first trip to Boston in Nov 2010, the neurologist we saw had some of the records because we had gathered some of them to give to our local neurologist who then passed them along to Boston.  But after obtaining yet another inconclusive test result on the EMG, the Boston neurologist wanted to review more records.

So I contacted the birth hospital, the local children's hospital, Dan's pediatrician, and the specialists that we saw more than once.

By the time I was done collecting paper records, in early 2011, I had an overstuffed 6" binder.  Some of them were duplicates, but I kept every single page together and organized it by provider.  That binder went with us wherever we went after that.

The floor doctor in Boston that we saw in June 2011 (when we got Dan's diagnosis) borrowed the binder for a few days.  When he came back, he told us he had noticed some abnormal blood levels that Dan had since birth - something that no one had ever noticed before.  The most unnerving part of it not being noticed is that the specialists were all located at the local children's hospital, so they all had access to the same information!!  And those abnormal blood levels (if noticed well earlier) probably would have led us to a diagnosis quicker.

Dan was born in 2006.  With the exception of his pediatrician's records, all his records were kept in a paper record.  Even his pediatrician had to print all the records, even though they were kept electronically.

So where does that leave us know?

I read an interesting blog post from Boston Children's Hospital on allowing patients access to their records.  Based upon a global study, 96% of US doctors thought patients should have at least some access to their medical records.  The amount of access varied - from being able to make simple updates (demographical data, allergies, medications, family history) to having full access.

But obtaining access to your records makes sense - if you have some radiological procedure (x-rays or MRI or something in between), you would rather have those images and report to give to another provider rather than having to complete the test again (especially if it has only been a few weeks).  Sometimes the report isn't sufficient, the images themselves are more important.

So the next time you go to a doctor or lab or somewhere that has medical records, if you think you may need them in the future, make sure you know how to get to them!  And remember, most offices only hold records for 7 years if you are no longer an active patient, so get to them quickly!

Easter Photos

For some reason, Easter always felt like the fun holiday with Dan.  I got excited about coloring eggs with him and then hiding them (not too difficult) and having him find them - and the look on his face when he did find one.

So I wanted to share some of those Easter memories.

First Easter 2007

 Opening the Easter Basket in 2008 (age 1 1/2) 

 (No, they aren't real peeps)

Coloring eggs in 2009 (age 2 1/2)

Can't forget about eating the Chocolate Bunny with Daddy!

Finding Easter eggs in 2010 (age 3 1/2)

We never had a chance to get pictures in 2011, as Dan had really started to decline by then.




Dan's basket this year.  I found it exactly like this in the basement will all the other holiday decorations.

5 for Five - Week 13

It's a new week! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:
1. Do some more decluttering.
       One spot totally organized, another partially done, so that is a success
2. Set up an Elks area in the house for hubby. (see post coming soon about this)
        Papers are organized, so this is a start for now.
3. Read 10 newspapers.
        Done!
4. Drink more water during the day.
        Had a complete water bottle 2 of 4 days at work this week, so it's a start
5. Use my juicer.
         I made plum, apple, pear juice on Saturday morning.

I'm calling this week a success!!!

This week's goals:

1. Finish the decluttering on the one section that still needs to be done.
2. Write 3 blog posts this week.
3. Read 10 newspapers.
4. Drink one water bottle each day at work.
5. Eat 2 fruits each day.

I think this week is fairly doable - at least I hope so!