Stay Tuned

Yes, it has been four months or so since my last post. I simply could not keep up with this blog along with Ellie's update blog, and all of life in general. BUT it is on my to do list! In the next two weeks I hope to update on our homeschooling adventures and how our family is changing.

STAY TUNED! :)

On Ward!

Here we go....
My personal mantra. Here we go! Buh bye 2010, hello 2011. What an exciting time! I am looking forward to having more time with my girls and to make my house a home. With all of Ellie's needs I wonder often if we made the right move to this house. We maybe should have moved somewhere with more space for things like chickens and a goat, and dirt to play in instead of plastic play structures. And then I think, really? A goat? Do I really want a GOAT? Not really. Actually not at all.

What will January bring? I hope for healing and progress in many areas. Here's to hope.

I Am Tired.

Warrior Child by Tal and Acacia

Tal & Acacia - Warrior Child

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The day is ended and your not even dressed.
It's taken all you have to just get out of bed.
The war has kept you on your knees and you confess, "I am tired. There's nothing left."

When all you had was given in the raging fight.
You fear your life has been wasted here in this cold night.
Empty and alone you cry those precious tears.
Warrior child. I'm still here.

Forsaken? Not my warrior child.
Abandoned? Never will I forget you!
My child I love you so, and someday you'll finally know, but until then, please be strong.

You've carried soldiers on your back to get them here;
The wounded, broken ones you fought for all those years.
You fed them all you have and now you're weak and faint.
Loved you are, In Heaven's Gates!

Forsaken? Not my warrior child.
Abandoned? Never will I forget you!
My child I love you so, and someday you'll finally know, but until then, would you please be strong?

Forsaken? Not my warrior child.
Abandoned? Never will I forget you!
My child I love you so, and someday you'll finally know, but until then, please be strong.

Dizzy

Somewhere...somehow...sometime along the way, we became much to dependent on two incomes. I cant say we have ever become comfortable on two incomes, but we definitely have felt as if we had to have it. Medical bills keep rolling in, unexpected tax bills, and the desire to see family that are not within driving distance have all kept us pushing forward. The plan was for me to work full time one more year, and cut back next fall if I needed. Then came a four year old who asked questions like "Mommy can we look at the grass under the microscope to see why it cuts us?", and an infant with a rare illness, and the next thing I know I am shouting "I want off this ride!"

God often speaks to me through music, as I know He does to many! I love Tal & Acacia, the new group of sisters that are doing their first tours right now. One of their songs rolled my feelings into a nice little capsule that made me realize I was not alone, and not a failure. There are just simply not enough hours in the day, and something had to give. When God entrusted these children to me, I promised I would never make that something them. So this week I started the process of cutting back a full semester and one month earlier than anticipated. The hardest hit will be the bank account. But I am confident that the Lord will take care of us. He always has.

The Need to Hyperventilate

The more I find out the more I panic. I think they are called anxiety attacks. I have never had them before now. But with Elianna's diagnosis, sometimes I find out new information that triggers every single mama instinct I have to protect my child and then lets me know I cant do anything about it. What has happened a few times now is this feeling of no oxygen in the room and the ability to not sit still. Clearly I need to work on some coping mechanisms and being on my knees more. Hello....God? If you could just keep reminding me that I am not the one in control and that I can only do what is humanly possible?

Let me explain my panic a little bit. We now have this other factor to Elianna's condition to deal with it. It's called CORN. I had NO idea before now, and it has pushed me fully over the edge into conspiracy theory city. No, I dont think little green men are chasing us around, but I am continually amazed at the power of politics and government, and what the average person refuses to see. Here are two examples:

First, there is Elianna's formula. Her only source of nutrition that is medical grade and prescription, contains MSG. Yup, you heard me right. MSG. When I contacted the manufacturer (Mead Johnson) they used the FDA to back themselves up. Not medical studies or the best interest of my child, but the fact that the government allows it so it is acceptable. If this is not a pass for personal responsibility and a sign of how big government has hurt us then I dont know what is! The result? My new last name has to be Brochovich.

The second example is courtesy of corn. Elianna reacted off the charts to corn with her patch testing. And when the allergist pointed to it and suggested I try something else, I could only answer "there are none". NONE. Did you know that? NO formulas in the United States of America that do not have corn in them in some manner. NONE. Of course if you ask the specialists they say that the corn in them is so manipulated, diluted, changed, and modified that it is not really corn so it doesn't count. Sound like a joke? I am very serious. The number one ingredient in Ellie's hypoallergenic formula is 46% corn syrup solids.

Oh and by the way? MSG? Comes from corn. I suppose I should have titled this post 'How the FDA has pushed me over the edge".

The Correct Way to Measure Flour

Did you know? I had no idea!

Measuring the Right Way

http://www.savingdinner.tv/featured/measuring-the-right-way/

Out of the Funk

Ever since we discovered Elianna's reaction to corn with the patch testing I have been in a frustrated, helpless, sad, not-sure-what-to-do funk. It has been very difficult to shake. Funny how the Almighty takes care of things like this.

Recently some friends of ours had their twins extremely premature. In fact, she had the babies a week or so ago, and the babies are not due until January or February. Last night I learned that one of the extremely premature babies has gone to be with Jesus, and the other is barely hanging on with several brain bleeds.

This morning one of MFFs called and in conversation we discussed a friend she has with stage four breast cancer, and her three small children. Her chances are grim and she will most likely be leaving her babies behind.

I looked at my Ellie this morning and realized that both of these families would say: You still have her.

In spite of the stress, the unknowns, and the extreme lifestyle changes, Elianna appears to be happy, healthy, and growing like an average toddler. The Lord is protecting her future. Our home will be healthier in the end and we will be forced to rethink things to the 'nth' degree. She still suffers, she is still in pain often, and we have no idea to what extent she will be affected for life. But in the end our major stresses boil down to time and money - not enough. And the Lord promises to take care of us if we just let him. We still have her, and I wouldn't trade a minute of it. Good bye funk!

Pioneer not Hippie, Please.

As we have gotten farther and farther into the realm of family life with FPIES, I find myself exhausted with canning, puree-ing, dehydrating, researching, etc. I now have books about preserving foods, homesteading, and natural living. My latest adventure of looking to make my own olive oil soap has pushed me into the realm of embarrassment. Saving money, being healthier, and perhaps even looking 'green' have all been perks of our recent family adjustments. But making my own soap is a little too 'hippie' if you ask me!

Have you ever tried to eliminate soy, dairy, corn, processed grains, and sugar? It's relatively difficult. In fact, there are days that I just want to say 'screw it all!' and feed my family Oscar Meyer drowning in a coat of Heinz and resting in a Rainbow Bread bun. Agh! The more I learn, the more I wish I didn't know, and the more I have to explain to other people when they look at me with that 'oh you are one of THOSE' looks.

After expressing my frustration and insecurity to several friends, I think I have finally come to terms with the fact that I am making these choices out of necessity. I have a little girl in my house who can not have corn, dairy, soy, or grain products touch her skin. She can not accidentally ingest the soy based ink on the newspaper, or the corn base in the bath soap. It is my job to take care of her, and I will not be embarrassed.

I am a homeschooling, researching, canning, dehydrating, cooking, baking, blending, soon to be soap-making, chemical free mother. We avoid hydrogenated oils, soy products, refined sugars, dyes, preservatives, and processed foods. We limit our plastic, buy natural meats, and have organic fruit and vegetables delivered by a CSA.

I am not a hippie. I am a Pioneer. In many ways.

Non-Stick Cookware

Not the only contaminant.

FYI
Scotchgard = teflon.

Colgate Easy Glide Dental floss = PTFE

Glide Dental Floss by Gore = Teflon

And for a list of clothing from uniforms to no-stain pants.

FAQ about Ellie

1. Q. Does she just have food allergies?
A. Yes, she has food allergies. But not 'just' food allergies. Common allergies as we know them affect the respiratory system. FPIES affects the gastrointestinal system.

2. Q. What can she eat?
A. At this time she is on a liquid diet (prescription medical grade amino acid based formula). She has two safe foods - peaches and nectarines.

3. Q. What can she not eat?
A. Anything other than her prescription formula and plain peaches or nectarines.

4. Q. Will she 'outgrow' it?
A. Technically no, since FPIES is a Tcell response. Cells in her blood respond incorrectly to foods and those cells take an average of 18 months to die off. After those 18 months, when she is exposed to that food again, her body may choose not to react and that food would have become suddenly safe.

What is Food Protein Induced Enterocolitis Syndrome (FPIES)?

FPIES is a non-IgE-mediated gastrointestinal food hypersensitivity disorder. Food protein-activated intestinal lymphocytes elaborate inflammatory cytokines that result in increased intestinal permeability, malabsorption, dysmotility, emesis, diarrhea, pain, and failure to thrive.

In other words, FPIES is the intestinal version of anaphylactic shock. Eating food, particularly those high in protein, cause mild to severe reactions. Symptoms include some or all of these: malabsorption, colitis, shock, extreme lethargy, ulcerated colon, projectile vomiting/severe reflux, extreme diarrhea, failure to thrive, nutritional deficiencies, colic type symptoms, bloody stool, mucousy stool, rash, and stomach pains.

Only a Flesh Wound (or Not Who I Think I Am)

Today I thought to myself "I am so beat up." And then I laughed. My body hurts from lack of good exercise and carrying Elianna around on my hip. I have a 13 month old who still wakes multiple times at night to eat due to necessity. I think I tore something in my shoulder from reaching around to her in the car. Yesterday I impaled the palm of my hand when catching one of the baby rabbits I brought home for Moriah as a pet. And this morning as I was waking in bed Elianna gave me a head bunt accompanied with a large, fat lip.

Today I thought about how I felt beat up physically and then laughed because I feel beat up emotionally, too. The last several weeks have been full of my saying the phrase "I just cant do this" and then thinking "that whole line about He won't give you more than you can handle is crap; I am done." Then God spoke to me through a MFF blog. She was talking about how she was tired of the refining process and trying to be who she was designed to be. And God spoke to me. He said - 'Thats YOU. Let go of who you think you are, and allow me to shape you into who I know you can be.' It was a sobering moment. And I needed the day to process it. Along with a nap and another email from a MFF who encouraged me to visualize leaning on the Lord. I realized that I am limiting myself. That regardless of the events that the day holds, He is there, He is blessing me, and He is providing.

And then I thought about who I am, and I laughed. I often compare myself these days to the Isrealites and their journey in the desert. I find it amusing how often we want to head back to captivity when things get rough. Today I thought about how we often fight God's will for no reason, and end up missing body parts in the process (figuratively of course). Perhaps this was not divine, but I instantly had the thought 'Oh my gosh. I am the black knight!' For those of you who are unfamiliar:




God is so good. And I am so human. Sometimes I have to laugh.

Chickens Are Not Vegetarians: info for the FPIES and NON

The egg section of the supermarket makes me laugh. The variety of egg labels is insane. Organic, free range, cage free...the one that makes me laugh the most is 'vegetarian fed'. Could someone explain this one to me? First of all, chickens are not vegetarians. Sure, they eat vegetables and grains. But they also eat BUGS. In fact, left to their own devices, chickens will sometimes eat each other. Now if you are concerned about the poor bugs that are being eaten, then why are you eating eggs (which is meat by the way)? Perhaps you are concerned about omega 3 or omega 6 or omega 'whatever', and the vegetarian eggs are higher in this. These eggs break several of my personal rules on grocery buying. First, it is trendy. Second, we should be eating things how they were designed. And third, do you really know what that omega diet is?

Aside from bleaching white eggs and salmonella, the one thing that concerns me for my home is that the majority of commercial chickens are fed a diet of solely or almost all soy. The research I have seen shows that this passes on to the eggs, which really makes sense if you stop and think about it. So...

For the FPIES ~ when I get to the point that I can trial eggs for Ellie, how will I know if it is an egg fail or a soy fail if the eggs come from soy fed chickens? My mommy brain tells me that I wont!

For the non-FPIES ~ trust me when I say you have enough soy in your diet already. That is an entirely different research topic.

At the moment we do not have the ability or resources to have our own chickens, and Jason runs screaming from the room every time I mention it. The solution for my house is to find a local farm to purchase eggs from (thanks for the help finding a farm MFF!).

Here is a GREAT article on how commercial eggs are processed - quick and easy to read. If you are unable to open the link because you are not a member of Dr. Mercola's site, let me know and I will email it to you!

Are Organic Eggs Safer?

Conundrum

So. Having a sick child can be very consuming. Many moms have dedicated entire blogs to their pursuit of health for their FPIES children. I am very tempted to do that, and perhaps in the future I will, but for now, I find having a family focused blog is holding me accountable.

When I started writing I decided that I would focus on my new journey of homeschooling, as well as my passion for new information that will make my family healthier. The latter has turned into FPIES, and the first has gotten little attention.

Miracle after miracle led us to having Moriah, and once she was born, I was concerned that adding another child to our home would be difficult because he or she could never compete with or compare to her. The irony of that is that a large portion of our activities and conversations now revolve around her sister, and I want to make sure Moriah is not the one overshadowed right now.

Oh, to find that balance. On my knees I go again!

It's....A.....YES!

In record time we received word today that the insurance company has approved Elianna's formula and that there will not even be a co-pay! Thank you to everyone for your prayers!

Counter-intuitive

I knew the day was coming. It seemed a bit frightening, but I knew I would have to encounter it. Today was the first day Ellie fought me for food.

She has refused food for months now and it has been a battle to get her try new foods. She has been conditioned to associate food with pain. When she picked up a nectarine on her first birthday it was a celebratory moment. A week later we were able to declare peaches her first safe food. I began putting her in her highchair more regularly and exposing her to our mealtimes, hoping she would catch on and begin trying foods. She has a major aversion to certain textures and I have not been able to get her to feed herself. She also refuses to be fed from a spoon. About a week ago I received the God inspired idea to put her food on a stick and give it to her as a popsicle, and she ate it! She holds the dry wooden craft stick and licks the top. Too funny!

Today was not as exciting when I had to tell her no. Every mother wants to FEED their child. Give them vitamins, nutrition, sustenance, help them to grow. Not give them bottle after bottle of corn syrup solids mixed with lab altered ingredients and MSG. Today she fought me for a waffle. She fought me for Moriah's hot chocolate. She fought me for my coffee. And it all made me so sad.

It's late. I'm tired. I spend most evenings researching and wondering where the specialists are. If this is disjointed there is reason. I never ever thought I would have to tell my 13 month old no, ...that she cant eat.

I live in the richest country in the world where food is plenty and we have 'universal health care', and my daughter has a disease that keeps her from eating food and the insurance company wont pay for her liquid diet, her sole source of nutrition.

Every time we give her something that she reacts to we are set back by days and ,sometimes weeks. If we have to go back on the over the counter formula because we cant afford to purchase or cant get our hands on the prescription formula she needs we will be at a standstill for trialling new foods. Please pray that this prescription is not only processed fast but that it is APPROVED. Please, Jesus. Please, Father. Please, Creator of all who fashioned Elianna in my womb. Please.

Gross

Word to the Wise -
Rice Syrup (the sweetener) is gross. This includes baking of any kind. Nasty. Period.

Grocery Savings

Have you heard of the Coupon Mom? She has been featured on several shows over the last few years, including Opera. I have browsed her website, couponmom.com, several times but have not been successful in applying any of her tricks and tips to my personal shopping outings. This is largely due to the fact that I absorb and process information better when it is in a book. A couple of weeks ago I was at the library and stumbled upon the Coupon Mom Book on the shelf!

I thought I might share some of the beginning tips I have read so that those super busy other moms, and also those non-readers out there could benefit. But then again if you are a non-reader you most likely are not reading my blog, so better luck next time!

1. Plan a grocery budget.
2. Set measurable goals. Keep track of what you spend with an envelope on the fridge for all grocery receipts.
3. Use cash to stay on budget and carry a calculator while you shop.

4. Always check your receipt for accurate pricing.

5. Have knowledge of item price ranges so that you can know what a good deal is. (see number 22)

6. Plan shopping lists carefully and stick to your list.

7. Serve reasonable sized portions to children to save on food waste.
8. Plan a menu complete with snacks, and serve leftovers one night a week.
9. Designate one refrigerator shelf for clear containers of leftovers.
10. If you cant use leftovers within two days, freeze them for future use.
11. Eat leftovers of the previous night's dinner for lunch the next day.
12. Think creatively when reusing leftovers, and create menu plans with leftovers in mind.
13. 5-minute rule: If it takes you 5 min or less to prepare an item at home instead of buying precooked, prewashed or precut, then do it yourself.
14. Cook meals at home and steer clear of fast food.
15. Never shop when you are hungry
16. Shop alone if you can (AMEN!)
17. Do not assume every item in the store ad is a deal
18. Compare unit prices
19. Don’t fall for multiple pricing gimmicks (ie. 10 for $10 when they are $1 normally)

20. Check different departments for better pricing (ie. nuts in bakery aisle vs. nuts in produce)

21. Shop as quickly as possible

22. Make a price diary for at least 6 weeks to chart sale patterns and discover the true lowest price of items you regularly buy

If you would like more detail than this, please shoot me an email and I will gladly elaborate. Happy saving!

Contrary

Mary, Mary, quite contrary,

How does your garden grow?
With silver bells, and cockle shells,

And pretty maids all in a row.

There are a variety of explanations for this nursery rhyme that originated in England sometime before 1800 a.d. Regardless of what the actual truth is, I find this little jingle to be an accurate reflection of the life God has designed for me. Much like the popular phrases 'upside down kingdom' or 'set apart', I find the implications of Mary and her garden to be something I can relate to, particularly during this time of life.

What in the world am I talking about? Mary is contrary; opposite and going against the flow. And how does this reflect? It reflects in her garden where she successfully produces healthy flowers, and in her home where she grows beautiful maidens.

My home, as determined by the spinner of the universe (that would be God), has been blessed by two beautiful little girls who were designed for us and delivered in the most unusual manner. Like all children, they are unique in design, and have their own special needs. Moriah's medical needs seem mild compared to Elianna's. Her speech and swallowing struggles will hopefully fade by adulthood, but her perception of the world as God designed it and her spiritual depth have left me on my knees and searching the internet for guidance on many nights. I have no doubt there are times that she just disappears into her room where she talks with Jesus, and I pray that stays the same as she grows.

Elianna has a different journey laid out before her that appears to be more dependent on the physical. I often must stop and remind myself that her chronic condition is more than just meeting an immediate physical need, and that it is more than my exhaustion and struggles for answers. It is about her. I am sure the spiritual and emotional effects of her condition will be more evident as she grows. But for now she is the most interesting experiment of nature versus nurture, and genetics versus spirit. My heart aches for this little girl who has know pain from the first time she ate at only a few hours old. By 10 weeks old her intestines were ulcerated and filling her diapers with blood. Now at 13 months old we have narrowed her diagnosis down to two possibilities, sustain her on a medical grade amino acid based formula, and she has one safe food that we have been able to determine does not send her intestines into a mal-absorbing state of shock. Her first birthday included a rectal biopsy and scope, and an attempt at a new formula that sent her into three days of pain. In spite of this she continues to thrive, grow, and meet milestones. We obtained our first baseline at 12 months on a corn syrup and MSG filled formula, and for the first time in her life she has had no projectile vomiting and less intestinal distress.

What has all this meant for our home? With our first child I began the process of removing 'the world' from our home environment. I restrict television and movie influences, pay careful attention to our social environments and focus my attention on emotionally and spiritually growing my child(ren). Time on my knees has convinced me that the first many years of a child's development are critical for a future relationship with her Creator and her overall perspective on the world. I made hard choices that included removing some relationships that were unhealthy, and attempting to break cycles that I saw as generational. Contrary. Opposite. Not always received well, even within the church, I made these choices in order to grow my garden and produce beautiful maidens.

With the arrival of our second child, the Lord challenged me to examine other areas of health in our home. Like it or not, I am now on the road to becoming Laura Ingalls Wilder of the 21st century, armed with modern science and resources. I can now look back and see how the Lord has prepared me for this through friendships and encounters of information. Prepared is a strong word. I don’t know how I could have ever been prepared for this! For some reason there are life topics that are accepted by others and easy to explain. Then there are those topics that are judged harshly and many choose to ignore. Welcome to the topics of food and intestinal health in North America. Everyone has an opinion, and no one seems to understand my daughter's condition.

What I have discovered is that I need to turn my God-given love of gardening into health for my family. I pray that I can be strong enough to be contrary to mainstream, and grow my garden free of spiritual stumbling blocks, worldly influences, pesticides, and petroleum products. My hope is to be on my knees in the garden every day, that I may produce beautiful maids lined up in my home.

"Enter by the narrow gate; for wide is the gate and broad is the way that leads to destruction, and there are many who go in by it. Because narrow is the gate and difficult is the way which leads to life, and there are few who find it." Matthew 7:13-14 NKJV

Perhaps we are all meant to be contrary.

Trial by Fire

School has started! Officially we are in week two. Or three maybe? This week I learned a valuable lesson. I often tell my families that I work with to remember that it is 'homeschool', not 'school at home'. Parents must go through a time of de-schooling themselves in order to effectively homeschool. I have had parents buy Bingo games for one child. I have had parents do circle time with one child. These things don't sound very fun to me! Today I was in need of de-schooling, and de-educatoring, and de-just-about-everything.

Tuesday I got out my neatly typed lesson plan and schedule for the day. It included Language Arts activities in handwriting and reading, math patterning, science reading, and history worksheets. It seemed very standards based, very organized, and very goal oriented. Half way through the first worksheet and about 3 minutes into our day, Moriah very dramatically threw herself over sideways onto the kitchen table and declared "My body is sooooooooo tiiiiiiiiiiiiiiiiiiiiiiiiii-red. I dont WANT to do more work. I have been talking alllllllllll day." Ugh. Not a good start. And so went the majority of the morning. A little work. A long 'recess'. A little work. A long break coloring pictures. Frustrating!

Somewhat later in the day I finally thought about the day before. An entirely different day. We had gone to the free zoo day in town. We spent the morning observing animals during feeding time, petting a box turtle, boa and tortoise, and talking to docents. Moriah learned and practiced reading a map as she guided us around the zoo. We learned how giraffes drink water in pairs because they are vulnerable when they drink and need a look-out for lions. We talked about how God designed things like giraffes to reflect Him, and how it shows us it is important to look out for our friends. We counted things, read speed limit signs, and finished off with a fun ride on the Merry Go Round. What could be better? It was such a fun day! And...involved no table time. No worksheets. No drill and kill. And LOTS of learning. Ugh.

OOPS. I think my next task will be to write down all the things I frequently tell other parents, so that I can look in the mirror and read them out loud to myself!