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!