5 for Five - Sept 30

Here is the next installment of 5 for Five with Jenn at Party of One.

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 more newspapers. Total fail. I maybe read one.
2. No daytime naps. I didn't nap, but I went back to sleep every morning, so this is a fail too.
3. Create a Shutterfly book. Done. Not ordered yet, but it is created.
4. Finish some NNPDF things. I got some small things done, but not the larger things, but still a success.
5. Do more organizing. Nope.


Ok, so what are my goals for this week?

1. Read more newspapers.
2. Redesign the blog.
3. Figure out which dress clothes fit to return to work next week.
4. Stay up all day, what would be a work schedule.
5. Make sure Daddy is all set to care for Ms. Shelby

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.

Crying over music

At different times we have all had strong emotional reactions to music.  We love certain songs.  We hate others. Some bring back strong memories. But we have some measure of control over our emotions.

Can you imagine not having control of your emotions and crying every time you heard certain types of music?  The child in the article linked below has a rare disease that causes him to cry when he hears certain types of music, "especially classical music or pop songs about love."

http://abcnews.go.com/story?id=20318461

What if ?

This was my horoscope from a few days ago:

Is there a chapter from your life that you would love to dramatically revise? Do you keep mulling this thought over and over in your mind, wandering "what if" I did it this way or that way? If so, you surely know that you cannot rewrite history. You cannot remove that chapter and replace it with something else. But what you can do is go back over it (but not obsessively) and try to draw some kind of wisdom from it. And then, instead of trying to rewrite what can't be rewritten, write a new and wonderful chapter that will incorporate what you learned. -- Copyright © DailyHoroscope. http://bit.ly/DHmobile

 ****
I'm sure all of us have some chapter in our lives that we want to rewrite.  But since we can't we need to learn from it and move forward.

For me, there are so many things I would have done differently with Dan.  Some decisions I made because I didn't have enough information to make a better decision.  Other decisions were made because I didn't have enough time to make a decision. And still other decisions were made because I didn't fight for what I wanted.  But I can't go back now, I can't save my baby boy.  I have to live, learn, and share my new knowledge.

This is why I created a group for parents of kids with special needs of any kind.  We share information with each other that you can't get elsewhere, like what does Medicaid cover or who to contact for some particular equipment.  We share resources like places that are wheelchair accessible or online resources or classes on how to advocate for the services your child needs in school.

This is also why I wanted to give back to the Niemann-Pick Disease community. I joined the Board of Directors to be a vocal voice for all the families that don't know what they are dealing with.  To provide assistance and guidance to those who are newly diagnosed or are overwhelmed.

Take a minute and re-read the horoscope above and think about what you can learn from the chapter of your life that you want to rewrite.  And how you can incorporate those lessons to your next chapter.

5 for Five - Sept 23

Here is the next installment of 5 for Five with Jenn at Party of One.

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 one. Not exactly a success.
2. Schedule posts for the next few weeks. I wrote and scheduled a few for last week and have a few started for this week.
3. Start to get on a schedule before returning to work. I did get up early and didn't take a nap most days, so that is a success.
4. Do some more organizing. I cleaned off the kitchen table for the most part.
5. Spend some time with family. I spent a few hours with my grandma, my aunt and my cousin yesterday.

 

Ok, so what are my goals for this week?

1. Read more newspapers.
2. No daytime naps.
3. Create a Shutterfly book.
4. Finish some NNPDF things.
5. Do more organizing.


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.

Leukodystrophy

This post is not designed to provide medical advice.  If you have any questions or concerns, please contact your physician.

For more information, see the Wikipedia listing and the United Leukodystrophy Foundation.

Overscheduled?

I read this wonderful post about not letting your schedule control you.  It is written in the context of an office setting, but can easily apply to home life too.

"Time is the great equalizer. We all get the same amount — the only difference is how we use it. Some get right down to business, managing to squeeze an amazing amount of work into a small amount of time while others fritter away hours on unimportant tasks and time wasters, never really getting past the first to-do on the list.

The challenge is staying on task while remaining flexible enough to actually have a life, how to master your tasks without over scheduling yourself to the point that you feel overwhelmed and overloaded. Easier said than done."

http://www.momeomagazine.com/be-a-task-master-take-control-of-your-time-without-being-a-slave-to-your-schedule/

Eating what you need

Everyday you hear about some food that is good for you or bad for you. Some study that shows some food helps cure some condition or makes a condition worse. 

We hear about lactose intolerance, gluten free and peanut allergies. 

We are told to eat more yogurt and fat free milk to get calcium, Greek yogurt for protein but are also told to take a vitamin with iron.  But what is wrong with these items?  They are all man made.

What happened to eating foods that haven't been processed or changed to include more nutrients?   Who says that everyone needs the same level of added vitamins and minerals?  Just as the number of calories you consume varies with age, wouldn't the amount of vitamins and nutrients also change? 

I'm sure I can find one study that says red meat is bad for you. I'm sure I can also find a study that says red meat is good for you.  But who reads the studies?  We all hear the sound bites on the news and then eliminate or add that particular food from their diet.

I remember years ago that eggs were reported as being bad for you because they had lots of cholesterol and high levels of cholesterol is bad for you.  Since then the medical world has determined there are two types of cholesterol.  And there are now studies that say eggs, in moderation, are good for you. And the egg yolks are better than egg whites because they have lots of good nutrients and natural vitamins and minerals that most people don't get enough of.

What if we all went back to eating natural foods?  I'm not talking about the "all natural" foods that have been created and are on the grocery store shelves. I'm talking about fruits and berries off the trees, eggs directly from chickens that roam free, beef from a cow that can roam and eat what it wants.  Ok, so these things are on the shelves of the store and are called free-range and cost extra.  But who has the extra money in this bad economy? 

Ok, so where am I going with this?  Everyone needs to find the foods that give them the nutrients they need.  Every person is different because we all metabolize nutrients differently.  So if you want to find the foods that are best for you, talk with a doctor or nutritionist and actually measure the levels of vitamins and minerals so you can determine exactly what your particular body needs.  Realize that a one size diet for everyone doesn't work.

5 for Five - Sept 16

Here is the next installment of 5 for Five with Jenn at Party of One.

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. Get next week's 5 for Five post done for Monday.  I'm writing it on Monday morning.
2. Write (and schedule) future blog posts. Nope.
3. Read some newspapers. I read two, not as many as I wanted.
4. Do some organizing. Organized Shelby's closet and dresser. This girl is blessed with so many clothes.
5. Start thinking about what I want to do for Niemann Pick Disease Awareness Month in October.  I'm open to suggestions. Had a friend post about a fundraising opportunity.

Ok, so what are my goals for this week?

1. Read some newspapers
2. Schedule posts for the next few weeks.
3. Start to get on a schedule before returning to work.
4. Do some more organizing.
5. Spend some time with family.


Anyone want to join me in making some goals?


So what are you planning for this week?  Feel free to post them below if you want.

Mitochondrial Disease

This post is not designed to provide medical advice, just awareness.  If you have any questions or concerns, please contact your local physician.

What is Mitochondrial Disease?

Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function. In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. For many, mitochondrial disease is an inherited genetic condition, while for others the body's mitochondria can be affected by other environmental factors.

Possible Symptoms of Mitochondrial Disease: (Think mitochondrial disease when three or more organ systems are involved)

Brain
•Developmental delays
•Dementia
•Neuro-psychiatric disturbances
•Migraines
•Autistic Features
•Intellectual or Cognitive delays
•Seizures
•Atypical cerebral palsy
•Strokes

Nerves
•Weakness (may be intermittent)
•Absent reflexes
•Fainting
•Neuropathic pain
•Dysautonomia - temperature instability&
other dysautonomic problems

Muscles
•Weakness
•Cramping
•Gastrointestinal problems
•Dysmotility
•Irritable bowel syndrome
•Hypotonia
•Muscle pain
•Gastroesophogeal reflux
•Diarrhea or constipation
•Pseudo-obstruction

Kidneys
•Renal tubular acidosis or wasting

Heart
•Cardiac conduction defects (heart blocks)
•Cardiomyopathy

Liver
•Hypoglycemia (low blood sugar)
•Liver failure

Ears & Eyes
•Visual loss and blindness
•Ptosis
•Ophthalmoplegia
•Optic atrophy
•Hearing loss and deafness
•Acquired strabismus
•Retinitis pigmentosa

Pancreas & other glands
•Diabetes and exocrine pancreatic failure
(inability to make digestive enzymes)
•Parathyroid failure (low calcium)

Systemic
•Failure to gain weight
•Fatigue
•Unexplained vomiting
•Short stature
•Respiratory problems

 

 

Saving Money

In general, I am a saver, not a spender.  But when Dan got sick and we started incurring additional medical costs, I tried to step up the savings.  I didn't have alot of time then to really devote to it.  But since Dan died, I've really started to focus on couponing and saving money.

With the help of some coupon websites, I was able to save alot on a few items when I went to Target quickly:

Huggies Size N diapers, 36 count, regular price $8.99

• used $3.00 manufacturer coupon from newspaper
• used $1.00 Target mobile coupon
• used 5% discount from Target Cartwheel

2 Huggies Wipes, one 56 count, one 64 count, regular price $2.39 each

• used (2) $0.50 manufacturer coupons from newspapers
• used $1.00/2 Target printable coupon
• used 5% discount from Target Cartwheel

Ore-Ida Frozen Potatoes, Olive Oil and Sea Salt, 24 ounce, regular price $2.69

• used $1.00 manufacturer coupon from newspaper
• used $1.00 Target printable coupon

Scott Extra Soft Toilet Paper, 9 roll, regular price $5.79

• used $1.00 manufacturer coupon from newspaper 
• used $1.00 Target mobile coupon
• used 5% discount from Target Cartwheel

Received $0.15 for using 3 reusable bags.

Total before tax - $10.08.  Saved $12.17 in coupons and Cartwheel savings.

I then submitted the receipt to Ibotta, a smartphone app that sends cash for buying certain items. I earned an additional $3.50 for buying the items above which I transferred to Paypal.  Ibotta also had a $2.00 bonus earning opportunity when buying diapers and wipes together. So I earned $5.50 in this trip.

I usually don't do this good, so I had to brag a bit.

In Remembrance

Twelve years ago, the unthinkable happened.

Airplanes were intentionally flown into each tower of the World Trade Center and the Pentagon.  As far as I know, the final destination of the plane that went down in Pennsylvania is not known.

Regardless of your beliefs as to who was responsible, please remember that every person who died that day - in the planes, in the towers, in the Pentagon, on the ground - was a part of a family.  And those families are still grieving the loss of their loved one.

If you pray, please say a prayer for those families to have peace on this day.  If you don't pray, please think about those families.

Grief is never ending.

5 for Five - Sept 9

Here is the next installment of 5 for Five with Jenn at Party of One.

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. Share some big news. - Done!  See post here.
2. Write (and schedule) future posts for the next few weeks. - Done! I've scheduled some for the next few weekends
3. Read some newspapers. Done! I read 4 or 5, which isn't too bad with a new baby.
4. Spend some time with friends. Done! I did this on Sunday before the return of 5 for Five, but we also went to the Elks lodge on Thursday and Friday evening.
5. Find ways to trim my budget. Still working on this, but spent less than $50 on groceries last week.

So definitely 4 of 5,  but the 5th is kind of an ongoing one.

Ok, so what are my goals for this week?

1. Get next week's 5 for Five post done for Monday.
2. Write (and schedule) future blog posts.
3. Read some newspapers.
4. Do some organizing.
5. Start thinking about what I want to do for Niemann Pick Disease Awareness Month in October.  I'm open to suggestions.


Anyone want to join me in making some goals?


So what are you planning for this week?

The BIG Announcement

Welcome to our new daughter Shelby! 

She was born on August 7.

Shelby was born at 38 weeks and was under 5 pounds.  

She came home on time and has been steadily gaining weight.

We know that Daniel had a hand in bringing Shelby to us.  Not to get to personal, but she was conceived just about a year after Dan died.  And she was born on the same day of the month as Dan, the 7th.  I know her angel big brother will follow her everywhere and protect and guide her.

NNPDF Conference - Baltimore

The first four days of August were spent in Baltimore at the annual Niemann-Pick Disease Family and Medical Conference.

This year the International Niemann Pick Disease Alliance also joined us at the conference.  It was a unique chance to meet international families and realize that we are all bound together by the same issues.

We had the wonderful experience of welcoming Greg Crawford, Dean, College of Science, at Notre Dame University.  Greg was completing a cross-country bike ride in support of Niemann Pick reseach.  You can read about his ride and his fundraising efforts here.

I shared the photo of the yearly memorial service and the names of those lost since last conference.

I was also able to meet Kristen Lopez.  She lost her son Gavin to NPC just 12 days before we lost Dan.  At the time Kristen had a blog explaining all the changes and issues she was experiencing with Gavin.  We bonded over emails and Facebook, but had never met in person.  Here is a picture of the 3 of us at the Greg Crawford welcoming ceremony.

We also had a chance to meet a family that used to live a few hours from us but recently moved back home to Rhode Island to be closer to better medical care for their son Chase, who just turned 4.

There were so many families that I had only met online and many families that came to the conference for the first time.   Although it is an emotionally difficult time watching the disease progress, it is also an uplifting time meeting with other families and sharing a laugh or two.

5 for Five - the return

After taking the summer off, this is the return of 5 for Five with Jenn at Party of One.

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.

Since it was been about 6 weeks since the last installment, I will just start new goals.

So here we go again:

1. Share some big news.
2. Write (and schedule) future posts for the next few weeks.
3. Read some newspapers.
4. Spend some time with friends.
5. Find ways to trim my budget.

So what are you planning for this week?