Frugal Friday – Design Your Dream Life

Design Your Dream Life cradlerockingmama.com

OK, this is the very last post in the series about “Cleaning Up Your Financial House”. Thanks to traveling, sickness, and wonky food trials, this has taken me much longer to finish than I had planned. Thanks for sticking with me!

By this point, if you’ve followed the advice I’ve given, your finances should be solidly in the realm of “manageable” – or at least on their way to that point. You should know where your money is, where it is going, and have a basic plan to pay off debt.

Now you’re in the position of being able to try and cut corners where you can, because you can clearly see where you can gain the most benefit from a cost-saving measure.

That’s a beautiful place to be!

The last step on this journey is to design your dream life.

In the end, straightening up your financial house is as much about determining your personal goals for the life you want to live as anything else.

Sit down and think about what you want your life to look like; then figure out how to make your money fit that picture.

There is no one size fits all approach to financial planning. Everyone has different goals. 

Some people want to make MORE MONEY NOW. They want to be wealthy, and the picture they have for their lives will be far different from the person who simply wants to live the life they have, just without any debt hanging over their heads.

That person will have a picture of their future life that looks different from the person somewhere in the middle; who wants to live a slightly better life but is too burdened by debt to be able to attain that life at this time.

So first decide what you want your life to look like. Design your money management plans around that goal. 

All I hoped to do with this series was to serve as a “training wheels guide” to getting started on the road to good finances for folks who really had no idea how to start.

It’s time to take the training wheels off, and head out on your own.

Here’s where it gets tricky: there’s a lot of bad advice out there.

Even some of the books I have read that I gained some bit of knowledge from have gotten reviews that said some  of their advice was either misguided or even pure rubbish. I decided it was better to not recommend any specific sources, as I would hate to steer anyone into a situation where they read something that would make their situation worse based on my advice.

Instead, I’m going to share some general thoughts on how to keep your finances orderly and allow you the freedom to pursue life on your terms.

When it comes to money, con artists and snake oil salesmen are standing by, ready to submarine us on their own personal quest to “get rich quick”.

So be careful. Read as much as you can about personal finance, but take it with a grain of salt until you can prove the advice is sound.

In the quest to control our personal finances, I tend to keep the fable of “The Tortoise and the Hare” in mind; slow and steady tends to win the race.

There is NO method for getting rich quick; don’t be taken in by charlatans who promise high returns on an investment, or people who “guarantee” anything – they’re full of baloney and likely to rob you blind.

We all strive to do more with our money; to make more, save more, get more return on our investments.

But keep in mind the purpose of all that striving. Keep in mind your picture of what you want your life to look like.

If you keep that picture firmly in your mind, you’ll be able to see which financial information will help you, and which information just doesn’t apply to your goals.

Make the right decisions for your goals every day, and in a year you’ll be much closer to your dream life than you ever thought you could be.

In the end, this is what I believe is the key to true financial liberty:

  • Know where your money is going
  • Slash expenses where you can
  • Live beneath your means
  • Save for a rainy day
  • Avoid gimmicks
  • Decide what you want for your life
  • Read and learn as much as you can – but keep the salt shaker handy!

Good luck on the rest of your financial journey! I hope this has been of some help to anyone who simply didn’t know where to start.

Now that you’ve gotten a start, YOU can design the life you’ve always dreamed. 


Read the rest of the series here:

Part One: Where Are You Standing Financially?
Part Two: Organize Your Debt
Part Three: Make a Plan
Part Four: Focus on the Details


Don’t miss out on more great tips and recipes! Subscribe here!

The Egg Trial Begins

The Egg Trial Begins CradleRockingMama.com

Tuesday I picked up a dozen eggs from my parents.

Yesterday morning I cooked the first egg that’s been cooked in our house in over a year.

I was trying to make a custard-type egg dish for Zac, for a few reasons. For starters, it would be a relatively new texture for him, and that’s a good thing considering his diet is so limited. Secondly, baking eggs apparently makes them less IgE reactive – just in case. Third, there seems to be a theme that lots of FPIES kids can handle well-cooked foods, but not raw foods, so longer cooking time on an egg might make it better for Zac in terms of FPIES tolerance.

Like I say, I tried, but it didn’t quite work out right. I don’t think I added enough liquid.

What I got was more of a baked scrambled egg. Okay, but not the goal.

It’s a shame, too, because I’d taken some really good pictures to share the step-by-step instructions of how to make a custard egg without dairy or sugar. See?

Steps to make baked scrambled eggs CradleRockingMama.com

Oh, well. Maybe next time I can get it right!

I served it to Zac at breakfast yesterday morning, and he flat turned up his nose at it.

Seriously – look at this face!

Um...what exactly IS this, Mama?

Um…what exactly IS this, Mama?

He played with it a bit but didn’t really eat any of it. I chalked it up to the fact that he’d already eaten quinoa and bacon (pork belly) and probably just wasn’t hungry.

So I tried again at lunch.

The same thing happened! In fact, this time, it was worse; he requested quinoa be added to the bowl of eggs, and started picking out the quinoa!

I took video of this because it was SO unbelievable to me.

After I took the video, I grabbed his bowl and chopped up the egg pieces as small as I could possibly make them so they would just blend in to the quinoa and he would be unable to pick them out.

As soon as he got the bowl back from me, he put down his fork and refused to eat a single bite.

Seriously.

I was getting a little frustrated; the child doesn’t realize that the egg before him represents $246.00 in corn and soy free chicken feed, but I certainly do! How am I going to get him to eat this gourmet-priced egg?

I started thinking of all the ways I could make an egg that would be appealing to a 22 month old kiddo, just in case I had to whip up an alternative at dinner.

Turns out, I needn’t have worried.

Darrel came home from work, I called out “Dinner!”, Jed came running, food was added to plates, and Zac was plopped in the high chair. His breakfast/lunch/and-now-dinner bowl was placed in front of him (again) and AGAIN he refused it!

So Darrel said “Maybe if I feed him the first bite he’ll like it.”

To which I responded “I tried to feed him earlier. He pinched his lips closed and turned his head. But go ahead and try if you like!”

He tried.

And my stubborn, willful son opened his mouth, took that bite, and then proceeded to feed himself the rest of the bowl!

ARGH!!

Picky kids are enough to drive a mama insane, amiright?

Well, it’s only been one day of egg, so not much to report yet. No acute reactions, though, so that’s good. We’ll keep plodding along, trying to convince Zac to eat a little more egg each day until we’re up to a full egg per day. (Today’s serving was 1 T. only.)

If you don’t mind, I’d like to ask for any prayers you could send our way; both for eggs to be safe for Zac…and also that he’ll willingly eat them throughout the trial! 

Two little interesting things before I go, though.

First, I picked up a second nifty thing on Tuesday, in addition to the eggs: a bike chain for our fridge door.

Jed-proofing the fridge

Jed-proofing the fridge

We wrapped packing tape around it because the cord wanted to spring loose every time we unlatched it. Attractive, I know. Necessary, though, because Jed has already opened the fridge (when I had it unlocked and was standing right next to him) and informed me that “I want those eggs right there!”

Heart don’t fail me now! 

I’m a nervous wreck having eggs around Jed!

After all three meals yesterday, I swept AND mopped the floor around Zac’s high chair as soon as he finished eating. Jed is allowed free rein to play in the dining room, and the last thing I need is for him to pick up a stray bit of egg and wind up in the ER in anaphylaxis!

It feels weird, by the way, to be taking such extreme cross-contamination precautions for Jed instead of Zac. By keeping eggs out of the house, we’d reached the point where there really isn’t anything in the house that Jed could be damaged by, food-wise.

So while the egg trial is good for me and Zac, it’s bad for me and Jed.

Some days I just kind of hate food, you know?

Anyway, the second tidbit I wanted to share was for any of you who raise your own chickens.

My Dad reports that his “girls” have increased egg production from about 20-22 eggs per week to almost 35 eggs per week since going on the GMO-free, soy-free, corn-free food!

He says they’re also showing a TON more energy; they run full speed all over the property now and are much more active than they used to be.

He thinks they look healthier, too. Dad thinks their feathers look shinier and fluffier.

So that’s something to consider as anecdotal evidence that the old maxim “You are what you eat” applies to animals, too, and you may want to consider switching feed if you haven’t already.

And in case you have never seen photos like this, here’s a little peek at what eggs SHOULD look like:

All different sizes and shades of brown.

All different sizes and shades of brown.

And here’s the insides:

Did you know eggs yolks are supposed to be more orange than washed out yellow? Isn't this gorgeous?

Did you know eggs yolks are supposed to be more orange than washed out yellow? Isn’t this gorgeous?

I love that our eggs still have bits of feather stuck to the outside of the shell when I get them, and that the yolks are bright orange and so rich looking. 

If my parents weren’t raising chickens already, I’d have to start keeping my own flock after seeing this! (And assuming eggs prove to be safe, of course!)

Have you trialed egg for your FPIES kiddo? How did it go? And how did you trial it – baked, fried, baked in something? 

Quinoa-Mustard Crusted Salmon (Gluten & Egg Free)

Quinoa-Mustard Crusted Salmon Gluten & Egg Free CradleRockingMama.com

One fabulous side benefit of having a fun-filled weekend away from home is two small children whose sleep schedules are completely thrown off!

Children who don’t go to sleep until nearly midnight don’t leave their mama a lot of time to write coherently, after all. I decided it was kinder to simply not post yesterday than subject you the ramblings I’d managed to string together.

While I was too tired to write much of any worth the last few days, my tiredness didn’t stop the necessity of feeding my family. Surprisingly, I managed to whip up a recipe that thrilled Darrel and even made the ever-increasingly picky Jed somewhat happy! So I thought I’d share it with you today.

Sometimes the best dishes are the most simple, and this one certainly fits that bill.

Quinoa-Mustard Crusted Salmon. Yum!

So here’s what you do:

Get a big ol’ salmon fillet. Mine was about 2 pounds; a bit of overkill for my small family, but I was tired and not thinking. Oh, well. It makes good leftovers, too! If you decide to cook a smaller amount of salmon, you probably want to reduce the crust ingredients proportionally.

Thaw the fillet and lay it skin side down in a baking dish. I usually drizzle some olive oil in the dish first to help with sticking.

Pat the top of the fillet with paper towels to remove excess moisture.

Gather your spices in a bowl. You’ll need ground mustard, sea salt, pepper, thyme, and some Old Bay, if you want.

Spices gathered together. Spices are always so pretty, don't you think?

Spices gathered together. Spices are always so pretty, don’t you think?

Add quinoa flakes and mix together.

Spices and quinoa flakes all mixed up.

Spices and quinoa flakes all mixed up.

Pour on some lemon juice and olive oil and mix thoroughly until well blended. Even though it was thicker and slightly chunky, it reminded me of moist sand.

Wet stuff added to the spices - and it's a crust!

Wet stuff added to the spices – and it’s a crust!

Then simply use your hand to smooth that lovely crust over the top of the salmon fillet!

Smoothed crust over the top of the salmon fillet.

Smoothed crust over the top of the salmon fillet.

Put it in the oven to bake; 15-20 minutes is usually enough for salmon, but if you have a particularly thick fillet you may need to go longer. You’ll know it’s done when it flakes.

Fresh out of the oven!

Fresh out of the oven!

Serve it up with the veggie of your choice, and enjoy a delicious version of salmon that is moist, tender, and downright yummy!

Dinner is served!

Dinner is served!

Man, that looks delicious!

Yum!

Yum!

Quinoa-Mustard Crusted Salmon (Gluten & Egg Free)
 
Prep time
Cook time
Total time
 
A delicious, moist, crusted salmon sure to satisfy at dinnertime! No eggs or flour required!
Author:
Recipe type: gluten-free, egg-free, fructose-friendly
Cuisine: seafood, dinner, entree
Serves: 7-8 full servings
Ingredients
  • 1¾-2 lb salmon fillet
  • 1 c. quinoa flakes
  • 3 T. ground mustard
  • 1 T. sea salt
  • 1 tsp. pepper
  • 2 tsp. thyme
  • 1 tsp. Old Bay seasoning
  • 2 T. lemon juice
  • ¼ c olive oil
Instructions
  1. Thaw the salmon fillet.
  2. Spread some olive oil in a baking dish and lay the fillet skin side down on the oil.
  3. Blot excess moisture from the fillet with paper towels.
  4. Heat the oven to 400 degrees F.
  5. Add all the dry spices to a bowl.
  6. Mix the quinoa flakes in to the spices and stir until combined.
  7. Add the lemon juice and olive oil to the quinoa/spice mixture and stir until all dry ingredients are moistened.
  8. Using your hand or a spoon, spread a thick layer of the crust mixture over the salmon fillet.
  9. Bake for 15-20 minutes; salmon is done cooking when it flakes up on a fork.
  10. Enjoy your delicious dinner!

What’s your favorite method of cooking salmon?

A Fun Little Getaway

A Fun Little Getaway CradleRockingMama

You may have noticed the absence of last weeks Frugal Friday post. That’s because on Thursday, Darrel and I were madly prepping for a weekend getaway, racing to the airport, and flying down to Houston.

My oldest friend in the world has an amazing son…who happens to be graduating from high school this year.

A few weeks ago Darrel commented that he sure wished we lived closer so he could take photos of her son; not only is he a graduating senior (Darrel’s target client), but he’s quite a good-looking kid! He’d be a great model!

I sent a message to my friend, intending to tell her this as sort of a compliment on her son, and it turns out she hated the senior photos he had taken.

Her actual comment to me was “I wish you lived closer so Darrel could take his pictures!”

Well, that was just too perfect to let go!

Next thing you know, we were scheduling a trip to Houston to take some senior photos and visit with one of my best friends in the world…who I haven’t seen since a few weeks before Zac was diagnosed.

Every time I go for a while without traveling with the kiddos, I’m in for a shock.

When I was 20, I went to Germany for a 16 day vacation. I took one suitcase and my backpack.

For this 2.5 day visit to Houston with Darrel and the kids, we had 5 bags, my purse, a stroller, and two car seats.

I really miss traveling light.

Sigh.

I had also, with Darrel’s help, cooked up all the food Zac and I would eat for the extent of our time away from home beforehand, as well as some of the food Jed would eat.

It’s absolutely impossible to do anything spur of the moment with food allergies and FPIES.

But it turns out, it’s absolutely do-able to go on a trip.

We had a blast this weekend! All of us!

My friend and her husband are unbelievably helpful and supportive of my kiddos food issues and were very accommodating and protective of my boys.

I have lots more to say about this weekend, but upon our return home I was soberly reminded of the fact that I left the kitchen in a state of disaster, I need to unpack completely and do some laundry, and, frankly, I’m exhausted.

Traveling really takes it out of me! (And yes, I appreciate the irony that traveling exhausts the Flight Attendant.)

So I’m going to be brief today, and share more later this week. We had a great time, and wish we could have stayed longer, but it is good to be home.

How was your weekend?

Are You An FPIES Mama?

Are You An FPIES Mama CradleRockingMama.com

Recently I met a new FPIES mama, and talking with her about her overwhelming journey into the world of FPIES prompted me to start re-reading my own story from the beginning.

When I got to my post from September 4, 2012, I laughed out loud.

I’m amazed that I wrote something so spot-on so early in my FPIES journey; almost every word of this is still true even now, almost two years in to life with FPIES.

So I thought I’d recycle this post to share with my new readers who may not have seen this the first time around, and add a few new quiz questions, too!

Oh, and my disclaimer at the end is still true…but more of these apply to me now than did back in September 2012!

Enjoy a laugh!

__________

I started writing a post about what life as an FPIES Mama was like, with all the best intentions of helping people understand the stresses and challenges of our lives.

During editing, I realized I was depressing myself! It IS hard, but there is still joy in life!

Instead of being serious and depressing, I made up this handy-dandy little quiz that will help convey what FPIES living is like, while giving my fellow FPIES Mama’s a laugh (hopefully)!

ARE YOU AN FPIES MAMA?

(Answer “YES” or “NO”)

  1. I have photographed my child’s poop.
  2. I have scrutinized my child’s poop.
  3. I have spent more than three hours of my life on the phone with manufacturers about ingredients in food, skin care, or cleaning products.
  4. I give small children with cookies suspicious glares when they approach my child.
  5. I avoid play dates like the plague.
  6. I have bought kitchen utensils or appliances for the sole purpose of decreasing cross-contamination in my kitchen. OR
  7. I have made my home a “trigger-free” zone where only safe foods are allowed.
  8. My family has given up on having family dinners, and now eats in “shifts” so our FPIES child doesn’t feel left out.
  9. I have learned at least three new ways to chop vegetables.
  10. I now cook with ingredients that I didn’t know how to pronounce a year ago.
  11. I now cook with ingredients that my husband thought were fictional foods in fantasy novels (i.e. Millet).
  12. I now think it is normal to cook 2 or 3 full, separate meals at each mealtime.
  13. I can’t really buy any food for my family at a regular grocery store any more.
  14. My stack of medical bills is thicker than my child’s foot.
  15. I know what a 504 plan is.
  16. I have a 3 page, typed instruction guide to give to the babysitter. OR
  17. I have decided that there is no one I can trust to keep my child alive, so I never EVER leave their side. Ever.
  18. I have bailed on my family for holiday meals because my relatives either don’t understand, won’t accommodate, or flat-out undermine my children’s food restrictions.
  19. I have bailed on birthday parties, pot-lucks at church, or other food oriented gatherings because it was ‘too dangerous’.
  20. I will not be able to afford a vacation, fund my retirement, or build a savings account for the next 4 years (at least!), but…
  21. I have traveled more than 200 miles to see a specialist for my child.
  22. I have bought and enthusiastically extol the virtues of amber necklaces.
  23. My first instinct when my child is sick is to check what essential oils I have in my cabinet.
  24. I prefer to use garlic-infused olive oil when my child has an ear infection before going to the doctor for antibiotics.
  25. I have bought a whole, grass-fed cow.
  26. I have either planted, or seriously considered planting a garden.
  27. I spend so much time in the kitchen I bought those cushiony floor mats for in front of my sink, counter and stove.
  28. I have taught doctor’s about my child’s condition, and told them how to treat it.
  29. I sweep or vacuum my dining room at least 5 times every day, because crumbs are evil!
  30. I’ve installed a lock on my refrigerator and pantry doors.
  31. Any time we leave the house, I have to pack full meals and snacks for every member of the family.
  32. I’ve forgotten what fast food tastes like.
  33. I’ve resisted the urge to slap someone who told me “Oh, a little bit won’t hurt him!”.
  34. I know what a T-cell is.
  35. I checked out a High School Biology textbook from the library to brush up on my knowledge of the gastrointestinal system.
  36. I’ve lost more than 20 pounds on an elimination diet so I could keep nursing my child.
  37. I’ve memorized the ‘mystery phrases’ manufacturers use in their product labeling.
  38. I know where all the local farmer’s markets are, and have become friends with a few of the farmers.
  39. I called my Grandma up to have her teach me how to preserve food for year round use since my child can only eat organic, un-processed fruits and vegetables.
  40. I can now speak “medical”.
  41. I have taught doctors about FPIES, and how to properly treat and maintain it.
  42. I consider it odd that people don’t “interview” doctors before becoming their patients, now.
  43. I keep a bag packed for myself and my child for the hospital at all times, that includes copies of their medical records.
  44. I hardly ever see or speak to my friends anymore, but ‘chat’ with other FPIES Mama’s on message boards every single day.
  45. There’s an election this year? Sorry, I’m too busy taking care of my family to have noticed.
  46. There’s no old wive’s tale, herbal remedy, or alternative therapy out there that I won’t at least consider for a moment for my child (even if I eventually discount it).
  47. I would go to hell and back – and sometimes think I already have – to get my child the proper medical care.
  48. I spend more time in prayer to my God than I ever did before.
  49. Some days I just want to cry, but then I see my baby smile and giggle and I somehow find the strength to put on my big girl panties and keep going.

If you answered “YES” to more than…oh, geez – you FPIES Mama’s know who you are! If you answered “NO” to most of these, then you aren’t – but please be nice to the Mama’s that are. They need your friendship and support very much.

Why don’t you offer to come do their laundry one day? They’ll love you for it!

Disclaimer: Not all of these conditions apply to me!

Do you have any quiz questions to add?

Banana Muffins – Vegan & Gluten Free

Banana Muffins Vegan & Gluten Free CradleRockingMama.com

Pre-FPIES and pre-fructmal, one of the most delicious creations to come from my kitchen was my vegan banana bread. ALL of us loved this bread!

It was flavorful, sweet but not too sweet, moist, and all but melted in your mouth.

It was still substantial enough to also withstand being slathered with jelly…if you had an inkling. Because really, it didn’t need a thing to make it better!

We have greatly missed my banana bread, but baking wheat, egg, dairy, and fructose free has been a real learning curve for me, and I hadn’t felt brave enough to tackle that recipe yet.

Until yesterday morning, when it dawned on me that – you know? I may not be able to pull off a bread, but I think I might be able to put together some banana muffins!

So I tried.

I succeeded!

These muffins hold together well, are moist and full of flavor, sweet but not too sweet…they’re awesome.

Jed could not stop eating them! He ate half a dozen muffins all by himself yesterday! My Mom ate one and was surprised by how much she liked it (and she strives to offer no-holds-barred constructive criticism on my recipes, since she knows I can’t taste them myself).

Here’s how you do it:

Mash up two bananas in a bowl.

Mashed bananas

Mashed bananas

Make up your chia eggs. Just put 2 T of ground chia in a bowl with 6 T of water and whisk together until well blended. Then let it sit for a few minutes while you get the rest of your wet ingredients together.

Ch-ch-ch-chia (egg)!

Ch-ch-ch-chia (egg)!

Add to the banana your quinoa milk, maple syrup, and vanilla, then toss in the chia egg and whisk until everything is blended well.

Wet stuff ready to go

Wet stuff ready to go

Add your dry ingredients next: almond flour, millet flour, hemp hearts, psyllium husk and baking powder. (Make this top 8 allergy free by subbing out the almond flour!)

Dry Ingredients ready to mix

Dry Ingredients ready to mix

Stir until well mixed.

We have batter!

We have batter!

Line your muffin tin with liners and fill each cup about 3/4ths full.

Ready to bake!

Ready to bake!

If you want, at this point you could sprinkle some nuts, oats, quinoa flakes, or fruit on top for a little extra pizzazz. I went for plain and simple, though.

Then pop in the oven for about half an hour and enjoy the heavenly aroma that fills your kitchen!

When a toothpick comes out clean, the muffins are done. Take them out if the oven and let cool in the pan on the counter for about ten minutes.

Cooling muffins - they smell divine!

Cooling muffins – they smell divine!

Then remove the muffins from the pan, take off a paper wrapper, and enjoy a delicious, healthy treat!

YUM!

YUM!

Banana Muffins - Vegan & Gluten Free
 
Prep time
Cook time
Total time
 
Moist, delicious, tasty muffins that happen to be vegan, gluten-free, soy-free, fructose-friendly, and potentially top 8 allergen-free - and healthy!
Author:
Recipe type: Breakfast, Snack
Cuisine: Vegan, Gluten-Free, Soy-Free, Fructose-Friendly
Serves: 1 dozen muffins
Ingredients
  • 2 chia eggs (2 T. ground chia + 6 T. water)
  • 2 bananas
  • ¼ c. maple syrup
  • ¼ c. quinoa milk
  • 1 tsp. vanilla
  • ½ tsp. baking powder
  • 1 c. almond flour (sub this out to make nut-free muffins)
  • ½ c. millet flour
  • ¼ c. hemp hearts
  • ½ tsp. psyllium husks (optional)
Instructions
  1. Pre-heat oven to 350 degrees F.
  2. In a small bowl, make the chia egg. Mix completely and set aside.
  3. In another bowl, mash both bananas.
  4. Add the maple syrup, quinoa milk, and vanilla to the banana and stir together well.
  5. Add the chia egg to the wet mixture and whisk until well blended.
  6. Add the almond flour, millet flour, baking powder, hemp hearts, and psyllium husks (if using) to the wet mixture. Stir together completely.
  7. Line a muffin pan with paper liners and fill with batter to ¾ full.
  8. Bake for 25-30 minutes, until a toothpick comes out clean.
  9. Remove from oven and let cool on counter for ten minutes.
  10. Enjoy your delicious, healthy muffins!

Do you just love banana bread, too?

The Secret Worry of Rare Disease Parents

The Secret Worry of Rare Disease Parents CradleRockingMama.com

This is something that has been on my mind for a long time, but I’ve held off writing about it because…well, it’s hard to write about.

Parents, by design, have to live with a certain degree of worry. We worry about little things, like whether our child is developing on track or socializing properly, and we worry about big things, like injury or harm to our babies.

Some would argue that today’s society is living with too much worry and fear; that childhood is being stripped of its magic and joy due to helicopter policies and laws designed to remove common sense from every interaction we or our children will ever have.

I tend to agree with that point of view, for the most part; I approach my childrens’ encounters with the world with much more of a “well, now you’ve learned, haven’t you?” approach, than a “don’t do that! You could stub your toe!” approach.

But those are generally the extent of the worries parents of perfectly healthy children deal with.

There is a worry that only parents of rare disease children must endure. It is a worry that can easily flip over to full-fledged fear; rattling us to our core and shaking us to our foundations.

It’s also a worry we cannot strictly avoid.

This worry?

Doctors.

Before anyone gets their hackles raised, here is what I am NOT saying. I’m not saying doctors are evil and awful and not to be trusted. I’m not saying doctors are monstrous and scary. Not at all.

But there is a justifiable concern for rare disease parents when dealing with some doctors.

Just as with any profession, there are good and bad representatives of all aspects of the medical field…doctors, nurses, techs, even billing.

But our children have rare diseases. “Rare diseases”, by definition, are unique, unusual, and often misunderstood.

That’s where the first part of the worry comes from: the worry of not being heard.

With FPIES, a common theme is for doctors to “blow off” a child’s reaction symptoms as a stomach bug, a virus, or some other typical childhood ailment. This is why many FPIES children are not properly diagnosed until two and three years of age, despite having shown reaction signs since infancy.

Doctors don’t believe the parents, and ignore them.

They belittle the parents knowledge of their child and convince them they are over-reacting, over-protective, or – in extreme cases – accuse them of Munchausen by Proxy.

That’s scary.

It is scary to know something is wrong with your child, only to be rebuffed by every “expert” you seek guidance from.

It can make you feel alone and confused; you may even start questioning your confidence in the truth.

After all, imagine if you believe the sky is blue, but every single person you say that to insists that no, the sky is actually red.

After a while, wouldn’t you start to wonder if – perhaps – you were color blind?

Meanwhile, your child is still sick, still failing to thrive, still scaring you to death with the severity of their reactions, and no one will help you.

It’s a terrible thing to be constantly undermined at every pass, despite mounting evidence of your child’s illness.

The worst part of the worry of rare disease parents, though, is that you will encounter the most dangerous kind of person in your medical travels: the doctor who will begin measures to have your children taken away from you.

Think this is a bit paranoid?

Sadly, no, it is not.

Without getting in to specifics, I can think of three FPIES families that I know of who are currently at some point in a legal battle over their children. I know of one family who has already lost – and regained – custody of their child.

All because a doctor somewhere along the way reported them to CPS.

In some of these cases, the extreme measures the parents were taking to keep their child healthy and thriving were not working and the doctors were concerned enough to involve authorities. From an FPIES families perspective, that decision is ridiculous and cruelly unnecessary, but at a glance it at least shows the doctor is concerned for the child’s welfare.

But in some of these cases, the parents simply disagreed with the doctors recommendations. Though the child was thriving perfectly well under their parents watchful care, the doctors took issue with the fact that the parents would not follow their instructions and reported them to the authorities.

This doesn’t just happen to FPIES families; one only needs to read of Justina Pelletier to realize this could happen to any family with a rare disease child who dares to seek a second opinion or disagree with a doctor, if they are dealing with the sort of doctor who puts personal ego above patient care.

It’s a terrible thing to worry about.

As a rare disease parent, if you encounter some unusual symptom or reaction in your child, this worry can cause you to speculate whether you should even mention it to your childs doctor.

You are well aware that if you bring enough “weirdness” in to the doctors office, you might become labeled a “crazy Mom”, and face some unpleasantness in response. On one end is simply getting the “brush off” and start receiving less-than-attentive care. In the middle is enduring an investigation by CPS.

And at the extreme end is actually losing parental rights to your precious child.

There is no happy ending to this post. No quick reference “this is what you do if…” conclusion.

My only true aims in writing this were to first give a voice to rare disease parents out there by saying “you aren’t alone in this worry”.

Then I hope sharing that this is a valid concern will enable family and friends of rare disease families to better understand some of the stresses they are under.

And finally, I hope beyond hope that good doctors will read this and recognize the difficult situation rare diseases put parents in, and open their minds and hearts to the parents of their patients.

If enough good doctors are willing to walk the uncertain, scary walk of rare diseases WITH the parents, instead of AGAINST the parents, the CHILDREN will benefit more than anyone else.

And that is all that everyone – doctors and parents – in the rare disease world should really care about.

The Children.

To be clear, we are not experiencing anything remotely like this, nor have we ever. This topic has simply been on my mind since the Justina Pelletier case has garnered so much attention in the media, and since hearing of my fellow FPIES mama’s experiences.

I would also like to give my sincerest gratitude and love to the excellent doctors who make life more sane and easy for FPIES parents. There are many of them out there, and they are like a breath of fresh air to an FPIES parent. Thank you, doctors!

Shelving Sunflower

Shelving Sunflower CradleRockingMama.com

Would you like to take a trip into an FPIES parents brain for a bit? Good. Then let me share with you what Darrel and I have been thinking and doing the last few days.

We started Zac on sunflower products Thursday a week ago. We’ve been using Spectrum sunflower oil and homemade sunbutter for the trial.

Some corn allergic people have reported reactions to Spectrum sunflower oil, but it seemed to be the least reactive brand of oil out there, so we took the risk.

Honestly, at this point, we could care less whether sunbutter becomes a part of Zac’s diet. We really just want the oil.

With the oil, we can make a “formula-like” drink to help replace the breast milk he usually takes when I return to work in May.

So this is a really vital food trial for us.

Aside from some strange reactions that only seemed to occur when we heated any sunflower products, Zac was handling sunflower beautifully!

Then on Tuesday morning, the boys woke up before Darrel and me. Instead of waking us up, our sneaky little mischief makers decided to climb out of bed and go exploring – unsupervised.

Prior to this, Zac has never climbed out of bed on his own. Apparently, his big brother showed him how and helped him get down to play.

Sweet, but terrifying.

When Darrel and I woke up, we saw that Jed had helped himself to his sunbutter from the fridge and had eaten it straight from the jar. On his step-stool. Where Zac can reach. Oy.

Jed’s sunbutter carries a high probability of cross contamination from soy, and undoubtedly from corn as well.

Just. Fabulous.

Because you KNOW that if the sunbutter was down where he could reach it, and there were no parental figures saying “NO!” to him, that Zac ate some of that sunbutter.

Sigh.

Well, sure enough, by the next day diarrhea had started. Thursday he pooped all day long, and had a lovely, bleeding diaper rash to show for it. That finally cleared up completely on Sunday afternoon.

Here’s the thing, though. We aren’t positive he ate any of Jed’s sunbutter. It’s safe to assume he did, but we don’t know for a fact. 

We also don’t know if he may be simply exhibiting a slow reaction to the minute amounts of whatever cross contamination is present in the Spectrum Sunflower oil…because we had noticed, over the course of the trial, that he didn’t seem to want to eat anything we simply drizzled oil over, but would eat the sunbutter. The sunbutter does have the oil added to it, but it is still mostly sunflower seeds.

So…no way to know exactly which one he is reacting to. Of course, it could easily be both!

Hmm.

Well, at that point we’d been trialing sunflower products for a full week, so we just pulled the sunflower trial for a break. Zac needed to get back to baseline before we could reintroduce it, anyway.

Only…my parents chickens will complete a full month on the expensive corn and soy free chicken feed as of Friday, the 14th of March. Chickens take about 30 days to create an egg from beginning to end, so that means that Friday we will have eggs that were made on just the “safe” diet.

Even with the Azure price on the feed, it’s still very expensive. So we need to get the egg trial underway as soon as possible. If eggs are not safe for Zac, that means we can stop buying the expensive feed sooner.

And we need him at full baseline before we begin that trial.

Besides, since we aren’t sure if he is having a problem with the sunflower oil itself, or a reaction to Jed’s sunbutter, or BOTH, we need to try and eliminate possibilities to narrow it down.

In my online searching for the best way to make homemade sunbutter, I encountered some instructions written in the early 1970’s on how to build your own sunflower seed oil press.

I’m not a fantastic builder, but from what I understand, it involves a car jack and some support beams and is probably about the size of an outdoor grill. Yay!

BUT…since we have oil seeds from my supplier, we can easily press our own oil for Zac if this doohickey works.

Fortunately, my Mom IS a fantastic builder, and she said she’s game to try and build us an oil press. (She actually made the stained glass sunflower in the photograph in this post! So talented!)

So we are shelving the sunflower product trial for now, so we can proceed with the egg trial and give my Mom time to build an oil press.

That way, when we do resume the sunflower trial, Zac will be LONG separated from any accidental “Jed’s sunbutter” exposure, and we will have NO cross-contamination in our oil. We will have a straight sunflower product trial, finally.

Then we can start the “If, Then” scenarios.

IF he does well with the home-pressed sunflower oil trial and we decide to call sunflower oil “safe”, THEN we can try giving him Spectrum brand again and see what happens.

IF he reacts to the Spectrum oil, THEN we know it has cross-contamination, and we will have no choice but to press our own oil for him forevermore.

IF he doesn’t react to the Spectrum oil, THEN we know that Jed’s sunbutter is not safe for Zac and will never trial it on him.

Isn’t FPIES FUN! (not)

The mental gymnastics behind deciding what to trial for FPIES, where to get it, and how to proceed are exhausting and overwhelming.

Oh, well. That’s our latest. I really, really hope that sunflower oil proves safe for Zac, regardless of how I have to procure it. He was gaining weight quite amazingly during the trial, but 3 days off the oil and he’d lost weight again.

He’s still heavier than he was before we started the trial, but I like seeing the scale go UP for him.

He needs the fats. 

Later this week we will begin the egg trial, and I hope that goes well, too. Eggs may or may not be the best food out there to eat (read the comments on this post), but it’s a food I can control the production and source of and therefore make corn-safe for my son. That’s too hard to find to shy away from any food.

Besides, it will make going back to work SO much easier for me. I can take hard-boiled eggs for breakfast!

So, how was your weekend? What fun mental gymnastics have you had to do thanks to FPIES?

Frugal Fridays – Focus on the Details

Frugal Friday - Focus on the Details cradlerockingmama.com

FPIES and other allergy stories have interfered lately, but Frugal Fridays are back! (At least for this week, at any rate.)

When we left off of this series, we had a basic plan to pay off our debt and two looming questions:

What if we have less money than bills?

and

What if we want to pay off our debt faster?

That’s the topic for today: Focus on the Details!

THIS is the part where all other Frugal Friday tips come in to play. This is the part where we focus on where the money is going, and how we can keep more of it in our pockets.

Eliminate Monthly Expenses

The first step is to take a good, hard look at our budget and go through it item by item. The first thing to ask is: can I eliminate this?

Some common items that people often eliminate to streamline their budget are:

  • Cable TV
  • Gym memberships
  • Land line phones
  • Magazine subscriptions
  • Memberships (Audible, other entertainment, etc.)

Basically look for anything that costs money on a monthly basis and decide whether it is worth keeping. You may surprise yourself with what you realize you could eliminate from your life – and your debt column!

I’m not going to go into huge detail about this; there are already TONS of blog posts and news articles written about this subject that are easily found online.

There are two things that should be kept closely in mind when doing this part of budget slashing: be brutal, and remember that numbers don’t lie. 

Reduce Monthly Expenses

Once you’ve gone through that, the next question for the items still remaining is: how can I reduce this bill?

An example from my own budget: I recently noticed a sales pitch when paying our cell phone bill and called the company. They were running a promotion that enabled me to change our plan, actually getting MORE coverage while saving $50 per month!

Pretty sweet!

In another case, I didn’t want to eliminate our land line completely, as cell phone service can get patchy in our area due to our rural location, and I wanted the reassurance of direct 911 access whenever necessary. However, we NEVER use our land line. EVER. It seemed stupid to pay for all the “bells and whistles” on our phone when the ringer is turned off and we haven’t made an outgoing call on that phone in over 5 years.

After a quick call to the phone company, I was able to shave a $45 per month phone bill down to a $10 a month “911 only” plan. Yes, it’s $10 a month, but the peace of mind in knowing that no matter what the weather is doing in our area I can access emergency services is worth that to me.

Saving $35 a month is still a great savings!

In my experience, there is absolutely nothing to lose (and often quite a bit to gain) in calling every single bill you have to see what can be done to lower your monthly bill.

I’ve successfully gotten my bills lowered with my electric company, phone company, insurance companies, and even credit card companies.

The ones that couldn’t lower my bill often were able to suggest tips or tricks to lower my usage, and thereby lower the bill.

Start calling one service provider per day to see what they can do for you. You might be surprised at how helpful they can be!

This technique works for simple, straightforward bills, but also can be applied to more complicated expenses…such as a mortgage or car note.

Refinancing a mortgage isn’t an absolute; even if you do qualify, there will be a lot of hoops to jump through – and it might take you years to pay off the closing costs with the difference in monthly payments. It may not be worth the expense, but it is worth running the numbers on.

Same goes for any auto loans you have. These will be easier to refinance, and you may be able to get a much kinder interest rate – or even keep your payment the same but have a shorter payoff date!

Again, no guarantees, but worth looking in to.

Reduce Living Expenses

The next step is to look at your living expenses. This is where food allergy families get shafted.

Normal families who can eat whatever they want can start playing the coupon game. They can wait for super cheap meat to show up in their local store sales sheets. They can figure out how to feed a family of 4 on $300 a month.

Food allergic families usually can’t do that, at least not to the same extent.

Often we are restricted to particular brands or types of foods that offer little in the way of coupons or discounts.

This is where it is important to get creative and think outside the box.

Some examples:

– If you have the storage for it, buying a whole grass-fed and finished animal and having it butchered is often much cheaper than buying individual packages of the same meat. You’ll probably find that scoring a second-hand freezer in good shape from Craigslist and running the electricity on it still nets you a less expensive meat source.

– Try to find co-ops. My local health food store operates as a regular grocery store, but for buying in as an owner at a small annual expense, almost everything in the store is less expensive than for non-owners. Plus, they offer discounts of 10% off any cases I buy. So things we consume lots of, I always buy in case form to save the 10%.

– Recently we’ve begun feeding my Dad’s chickens soy and corn-free chicken feed in order to have (possibly) safe eggs to trial for Zac. The feed is more expensive than regular chicken feed, but the biggest expense was shipping. A $21 bag of chicken feed cost almost $19 to ship!

I investigated Azure Standard, and found that we have a drop point within an hour of my house! Buying the chicken feed through Azure Standard means that I spend $60 for 80 pounds of feed instead of $145 for 75 pounds of feed purchased directly through the company. That is HUGE!

As a food allergic family, the best advice for reducing living expenses is to coupon what you can, look for cheaper ways to buy things (our quinoa is FAR less expensive through Amazon than on any store shelves), and cut back wherever and however you can.

In the end, you can shave hundreds of dollars off your bottom line through being fierce and determined about your expenses.

But what if that’s still not enough?

If you have cancelled as many bills as you can, reduced the monthly outlay on as many of the remainder as you can, coupon clipped where you can, bought in bulk, started buying whole cows, and done everything else you can think of to reduce your monthly costs, and you still have more month than money?

Come sit by me. We’re in the same boat. 

The only thing left to do at that point is to do what you have to do to survive.

Sell things on Craigslist or eBay. Try to make extra money wherever you can. Have a yard sale and clear out your house (added bonus of getting rid of clutter while making some money!).

In our case, we’re short on income because I’m staying home to keep Zac alive. Last summer I was very scared that my son wouldn’t be able to survive if I kept working, as my breastmilk was the only thing sustaining him.

Each food pass we get puts us closer to my return to work. When I return to work, we will no longer have more month than money. So for us, the situation is painful, but (hopefully) temporary. We’re willing to do typically…unwise…money moves in order to survive the few remaining months until that date (like putting living expenses on credit cards – VERY bad idea!).

If your situation is NOT a temporary one and you have more month than money,  it’s time to get really, truly harsh with your reality. You’ll need to decide if you should move to a less expensive living situation. Ask yourself if you can survive as a single car family. Look in to second jobs, or finding a better paying one.

Try getting a consolidation loan from your bank. They’ll often make you close out those credit card accounts, but the monthly bill will be less and the interest rate more favorable than the interest rate on a credit card.

It’s painful and stressful to be in that sort of financial situation. I hope some of the suggestions I’ve made can help anyone in that scenario begin digging their way out.

If you are truly in a bad place financially, you have to take charge. Next time, I’ll talk about continuing your education.

What techniques have you tried that have netted you the biggest budget boost?

Read the rest of the series here:
Part One: Where Are You Standing Financially?
Part Two: Organize Your Debt
Part Three: Make a Plan
Part Five: Design Your Dream Life


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Still Allergic to Egg

Still Allergic to Egg CradleRockingMama.com

Last week I took Jed to the allergist to be re-tested.

In about ten days, we hope to start an egg trial for Zac’s FPIES, but we are understandably concerned about doing this since Jed is so terribly IgE allergic to eggs.

It seemed prudent to get him re-tested to A. see if he’d managed to outgrow his egg allergy or B. at least see about getting refills on our Epi-pens and making sure the allergist remembered us…in case.

Jed endured the SPT (skin prick test) fairly well, as usual. His biggest complaint was that he wanted to be in the lobby, where the good doctor had a TRAIN TABLE for the kids to play with! We battled keeping Jed in the exam room for the duration of the test!

I’m sure you can imagine my sheer joy when the results were announced: NO skin prick reactions at all!

Well, he had a little +/- bump for Timothy Grass, peanuts, and dog, but those are hardly worth noting for us.

Unlike last year, though, Jed showed no reaction to any of the foods we tested – including egg!

My little brain immediately started concocting recipes I could make for Jed! How much easier would some of my recipes be if I could just add a single egg! Oh, joy!

Considering how bad his egg allergy has been, though, neither the allergist or I wanted to get ahead of ourselves. Jed needed a blood draw for the RAST test.

The kids and I trudged across the street to the lab and had Jed’s blood drawn.

This he DID have a problem with.

Ever since his Mesenteric Lymphadenitis experience, whenever he has to go to the doctor he always tells me “Doctor NOT poke me!”

If it is Zac’s turn at the doctor, Jed will inform me that “the doctor NOT poke baby brother!” (Cute, right?)

It happened while I was racing home to get our suitcases packed, but apparently the IV they put in him during that hospital visit was either poorly done or just very traumatic for Jed; prior to that he had never even commented on needles.

Sadly, my kids have seen enough needles for me to notice the change in his reaction.

Sigh.

Well, the phlebotomist drew his blood anyway, and then we drove home, eagerly awaiting news.

If the results were negative for egg, the next step was an in-office official food challenge for Jed – and I was looking very forward to it!

Not only would so much of my cooking be easier with eggs (not to mention the ease of breakfast if eggs were back on the table), but when we start the food trial for Zac, I wouldn’t have to be terrified of having eggs in the house with Jed around!

Jed, after all, is a stubborn child who thinks eggs are fascinating. Even though he knows eggs will make him sick if he eats them, he constantly wants me to get him those hollow plastic Easter eggs to play with, and begs to help my Dad gather eggs from the chicken coop when we visit.

I have no doubts that with eggs in my fridge, Jed will do everything in his power to sneak in and play with them when I’m not looking.

Last time he did that, the results were scary. I now know we should have shot him with the Epi-pen and taken him to the hospital.

We got lucky.

I don’t want to press my luck.

So I was very excited by the lack of results on the SPT!

Tuesday morning the allergist called with the results.

Turns out, Jed is still allergic to eggs, she said. Then she wanted to know if we picked up the Epi-pen prescriptions. 

There goes my good news!

It’s not all bad, however. Last year he was a category 2 on the RAST and had a 5/10 on the SPT, as well.

This year there was no reaction on the SPT and he’s only a category 1 on the RAST.

So he is – perhaps – growing out of it. (Though when he was one year old, his results were almost exactly what they are now and then worsened, so no guarantees that he won’t worsen again by next year.)

All I know is that when we start the egg trial for Zac, we will be getting hard core about kitchen safety.

There may be a more elegant way of accomplishing the goal of Jed-proofing my fridge, but for sheer certainty, I think we will have a metal chain and padlock around our fridge handles.

The child is very smart, clever, and incredibly stubborn, after all.

I can’t risk his life by being anything less than resolute in keeping him separated from the eggs.

Sigh.

Obviously this was a little bit of a bummer for us. Anyone have some good news to share?

__________

The photo in this post was taken last year when Jed reacted to trace eggs. Don’t worry – he hasn’t had a recent reaction!