WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, February 28, 2017

Double Stuffed Abby O's : Chocolate free, corn free, dairy free, gluten free, soy free...

1 1/2 cup all purpose gluten free flour
1/3 cup medium roast carob powder(Abby has been tolerating Frontier brand)
1/2 teaspoon homemade baking powder
3/4 granulated(C&H for cornfree) sugar
1/2 teaspoon safe for you salt(we use pink himalayan and grind it)
1/2 cup Tropical traditions coconut oil
1 slightely beaten egg
2-3 Tablespoons "homemade alternative milk" or water works fine

Preheat oven to 325

1)First,combine flour, carob,baking powder, sugar and salt.

2)As if you were making biscuits or pie dough, cut in the coconut oil.

3)Add slightly beaten egg and 2 Tablespoons of "milk" or water.

4)Mix until firm but workable dough, you may need to add another tablespoon of "milk" or water.

5) Roll out aprox 1/8 inch thick between 2 sheets of parchment paper( you may need to also lightly flour your parchment)

6) cut cookies and transfer to parchment lined cookie sheet.

7)Place cookies in the freezer for 10 minutes, you want the dough well chilled.

8) Bake for 12-15 minutes until crisp.

TIP: I have often not rolled them thin enough and my cookies never got crisp, I found 2 solutions. Either turn the oven on the lowest setting and let them dry out on the cookie sheet in the oven, or toss them in your dehydrator for an hour or two until crisp.

Before filling make sure they are cool.

"Fake Oreo Cookie Filling"

3 1/2 cup corn free powdered sugar(I make our's but if you have some store bought you trust is cornfree it works great too.)
1/2 Tablespoon granulated sugar(domino's)
1/2 teaspoon vanilla extract(homemade using potato vodka and vanilla beans)
1/2 cup palm shortening(Spectrum or Tropical Traditions)
2 Tablespoons HOT water

Place all the ingredients in a bowl and start mixing. I used a hand mixer and had a tough go of it, but it did blend. This stuff will be very thick. It will surprisingly roll into a ball with ease. If it is too sticky, add a bit more powdered sugar. If it is too crumbly add a touch more hot water.

You take about a tablespoon(or more or less depending on the size of the cookie)and roll it into a ball. flatten it slightly between your palms and place on your cookie. Top with another cookie and lightly press together.- Done!

Thursday, February 16, 2017

Reality 1 or 2

Those moments when you are running as fast as you can from a sense of engulfing panic that things could go so very wrong.

For Abby's entire life we knew even at the best of times that something was very wrong. We weren't always able to pinpoint what it was, or how to treat it, cure it, stop it, move ahead of it. Often the Specialists "saw it" "felt it" and they too could not pinpoint beyond that something was "wrong."

Each time I felt that panic nipping at our heels we ran faster, or we watched Abby's body catch up and balance out and we could again breath deeply. We were blessed with the ability to shut it out and move forward with our lives without putting her health first.

Over the years during the rough periods Derek would always say " she will be fine. ".

He was right(he generally is), yet despite knowing that again and again she bounces and overcomes, that stupid sense of impending doom nips at my heels.

"Mitochondrial Depletion Syndrome", FSGS, and other medical terms I search daily to see what is new within the field brings it all smacking me in the face at how very fortunate she has been, we have been. It also often triggers those troubling thoughts of I might not be able to hold the dam forever. Maybe the balance we have seen is that we are closing our eyes and hiding to avoid reality or is it just a fluke.

Today is one of those days I feel like we hover between two different realities. 1 reality includes the Depletion and all the potential horror that comes with it and the other reality is the one we have been chasing, working for and cementing which is that while she may have those diseases the "cause" can be removed or at least the aggravating factors that trigger progression we can remove.

The wild card is that on many levels the reality is that we have made massive changes in her environment/food and the progression slows to a trickle. Same thing happened as a toddler. I sure wish we could pat ourselves on the back and say "we figured it out!" But is that "wild card" dumb luck or real?

The problem is, it could be a fluke. A coincidence.. random foolish luck. Those baby toddler years are very hard biologically speaking because of the rapid growth, it is expected to see more symptoms and progression. Same can be said for the teen years, remarkable and stressful changes occur to the body that can and often do trigger progression. Her disease process could simply be mild and or unique, even the Specialists admit they don't know the half of it yet.

Are we simply enjoying a lull in the storm? Or have we leashed this journey and it is our unified and outlandish efforts and not her biology that has allowed for this stability.

The self doubt, the worry, the lack of confidence in these times are warranted. We are opting for a path that at least to us, seems to be making all the difference in the world, but is one that very few medical professionals would ever recommend for someone like Abby. There are hints of research, a zillion threads that have yet to be woven together by science that make it clear that we did not just randomly chose this path, but there are also the same amount of threads that can be combined that argue just as articulately against the path we are on.

There are days I wake up and really think I have lost my mind, that we have collectively lost our minds. I think about our "old lives", walking on the treadmill, schools buses rolling through the burbs day and night, running out for dinner or lunch multiple times a week, opening up a box for dinner,shopping and buying the latest greatest cleaner, smelly to make the house more welcoming, food without ever reading past the calories, going to the Dr and giving her whatever was prescribed without even reading the insert.. was that life really, truly adding to her poor health? What was it exactly that caused us to run from that life, what event triggered this radical change in our lives?

Or when it is 20 degree's outside and I am picking up chicken poo, filling ice cold waterer's in the pouring rain... or in 100 degree heat and humidity pulling weeds or butchering a turkey or a chicken, sweating like this old body has never experienced before. Scrubbing my feet after a day of dirt, poo, scratches and bites.. staring at fire ant hills as far as the eye can see..trying to figure out what welt on my body came from what bug and how many bites can my body take? Trying every trick to move ants and bugs from pouring giant heavy kettles of boiling water over the mounds to rubbing my shovel with cinnamon oil in hopes of discouraging them from attacking up the shovel handle.. that moment when I have to take the life of a bird that I have nurtured and loved in order to nurture and love my family. Plucking feathers? How many in my generation or daughters generation have ever plucked feathers from their food. Have we lost our minds? The 5 am grinding of teff grains for flour, the yogurt maker on the counter culturing homemade coconut milk- really have we lost our minds?

Even on the best of days when I have found a new food Abby tolerates, when I drink a glass of water from the well feeling good knowing it is safer then city water, when Abby is smiling and up to brushing her hair or helping fold laundry, there is that tickle of doubt in the back of mind.

In the patient population there are very few who have opted for a journey like Abby's. That doesn't help my self doubts.

Without a doubt Derek and I have been fearless in following our own destinies and are kind of proud at this point of how many doubt us or felt we had lost our minds for going against current trends or expectations. There have been huge rewards for our free thinking and a huge price as well.

This isn't gambling on a job across the country, or a gamble on which housing market will improve or fail,or following my gut that the girls needed more academics then the public schools provide, this is gambling on life. Abby's life.

Is that dramatic? Probably and probably not. Is it reality 1 or reality 2? Not sure today.

I woke up today wishing for the comfort of Specialists telling her, us what medical intervention we should do. I woke up wanting their reassurances that food, medications, environment in no way what so ever could make her worse. I wanted someone other then myself to make potentially life saving decisions, or at least life extending decisions, heck even simple quality of life decisions. But, I also had a moment of clarity.

She is more stable today then yesterday, then 6 years ago.

She is smiling more.

She is happy.

I am getting more exercise.

We have followed the Drs. creed of " First, do no harm."

So for today we will stick with reality number two- this journey is our reality and worth continuing.

Wednesday, February 1, 2017

Corn-Free Turkey

Corn-Free Turkey:

We haven't been able to determine whether Abby is reactive to Turkey or just reactive to what it was fed, or rinsed with, or injected etc. A few years back we spent a great deal of money on a local Turkey and she still reacted, but now that I am able to raise food for her I finally took on Turkeys to make sure we aren't removing a good source of protein from her diet.

I thought it would be the same as Chickens- not so. Turkeys need a lot more attention. They EAT like crazy! Not cheap when feeding them corn-free and soy -free Scratch and Peck and any(and ALL) organic greens I could find. I finally broke down and fed them some organic bread that did not have corn listed but I suspected it wasn't completely safe. They ate a lot of organic banana's, for whatever reason they adored them. They loved 3 helpings of dairy yogurt a day(I needed to make sure their protein needs were met and my homemade coconut yogurt covers the calories but not the protein). For the last six weeks I went out of my way to hand feed them every two hours throughout the day to make sure they gained weight as quickly as possible. (The cost calculations on what we fed these guys is mind blowing, that local organic turkey from the farmer you trust that is charging 100 dollars for it all dressed, rested to go? Buy it, you are getting a deal!)

Another issue was that the setup I have just wasn't spacious enough for Turkeys and chickens(my chickens were not into sharing ). So, I had to carry the turkeys in the morning to a 10 by 10 dog kennel and in the evenings I had to carry them back to their area of the henhouse. They were curious and sweet but big and strong and I am still covered in bruises and scratches. If we do it again I will make sure we have a building just for turkeys so I don't have to carry them! That last week was a tough one!

Butcher day came this weekend. Until we bought property the only thing I had killed in my life were fish and even those weren't easy on my heart. I suspect the only reason that I can participate in the butchering is because I know I have an obligation to the animal and also I keep in mind the end goal, which is to keep Abby's diet as corn-free as possible.

While butchering is hard on the heart and soul and it is labor intensive(especially with large strong birds) it really isn't complicated or hard. We hand pluck and even then 4 Turkeys took us about 6 hours start to finish(we set up the night before). Rinsing with water frequently and keeping our work area clean were key. When I pulled the turkey from the fridge today there was no smell what so ever. A huge different from the grocery store.

At 14 weeks my largest dressed broad breasted turkey weighed in at 23 pds. No complaints. If Abby tolerates turkey, then 23 pounds of meat could be split in a way to feed her for months.

Tonight Abby will try a bite of the first one to be roasted. Fingers crossed. On one hand it would be really terrific to add another protein to her diet, on the other hand the thought of raising more turkeys right now is daunting!
Not sure which critter comes next. Abby is opposed to rabbits(I have to admit after the struggle to butcher the big baby eyed turkeys this weekend I am relieved) and we aren't huge fans of goat meat so the goats are safe from me. I think though for at least a few months,I will focus on the garden.
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