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.

Friday, February 28, 2014

Justina Update

Beau Berman, TV News
MASS. DCF STATEMENT ON JUSTINA PELLETIER:

“Our primary goal has always been the health and well-being of Justina. We want the parents to be able to work with the providers and courts to ultimately move Justina back to her home state of Connecticut. That is the objective, and is consistent with our previous efforts to find an appropriate placement near her home. A medical team has been identified at Tufts, the family’s provider of choice, with the clinical expertise to care for Justina."

– Alec Loftus, DCF spokesman



Sure sounds like they are admitting they were WRONG...


Let see if their actions match their words.


Here is a Link to Beau Berman on facebook. If you get a chance stop by and thank him. He is a Mito Patients best friend right now, for the first time in a long time our Journalists and Media have done well. We need to give some positive reinforcement. He did good. Mito Families were left alone with ZERO support in these situations- it appeared no one wanted to be associated with the negative side of awareness and Mito. Beau is on my Hero List.

Thursday, February 27, 2014

Making Nofu Cheese (dairy free, corn-free, gluten-free, soy-free, nut-free,)


I have talked about this and did post months ago but since then I have taken better pictures and hopefully will provide better directions.

If you have eaten coconut yogurt you know it doesn't taste like dairy yogurt. It is different, thus your end product is not going to taste exactly like the cream cheese you are used to.. however, it is not a bad flavor at all. If anything quite mild. Chickpea nofu is a much milder flavor then soy tofu.

This melts(no strings,melts like cream cheese would) lovely on pizza. I have found we like it best when I blend in some italian herb blend into the "cheese" before topping the pizza with it.

I have used this in place of cream cheese in a number of baked goods. Again, the flavor is not as intense. We have found that a squeeze of lemon juice blended with it before adding it the recipe helps make it taste more similar to the original.

For us, this has been a good solution. Abby cannot have nuts or soy or dairy or corn or seeds... so we have such limited options. After going months without anything at all, Abby took to this stuff like a duck to water. We still miss cheese, but this nofu cheese has it's own goodness the best part being it doesn't make her sick. :-)

2 cups coconut yogurt(my post on how I make Coconut Yogurt)
1 cup nofu ( my post on how to make Chickpea Nofu)

Combine nofu and yogurt in blender. Blend until very smooth.

I place a plastic(yogurt is acidic) strainer lined with cotton muslin over a glass bowl.

Pour the pureed yogurt/nofu into the muslin lined strainer.

I gather all the edges together and use a piece of kitchen string or rubber band to hold it shut.

Allow to sit at room temperature resting in the strainer over the bowl to catch the whey as it drips.

Every few hours I will squeeze it to help encourage the whey to separate.


This is a 2 day process to get a firmer product. I usually put it in the fridge the first night and take it back out to the counter in the morning and continue to occassionally squeeze to help remove the whey.


Place in fridge. The second morning it should be firm enough to shape into a block.

I have found this freezes very well. I wrap it in parchment, then tin and finally slip it into a ziplock freezer bag.

Tuesday, February 25, 2014

Crumble Topping for Everything! (gluten free,corn free, soy free, egg free, nut and seed free, )


You know that delicious crumbly topping that you get on the top of a dutch apple pie? That is exactly what this stuff is, but better.

This is better because it comes with no pie. I bake a cookie sheet of this stuff up nice and crunchy and store in an airtight container. We sprinkle it on ice cream,yogurt,fresh fruits, or I am guilty of nibbling on all by itself.

So incredibly easy. I now and then crave pie but going through the motions of rolling out gluten free crust isn't something I am always in the mood to do. Or in the mood to clean up! This was I get that sweet and crunchy on my fruit and no mess! Oh and fast too!


TOPPING:
1/2 c. coconut oil(Tropical Traditions or what is safe for you)
1/2 c. brown sugar(we use domino's)
1 c. gluten free all-purpose flour
1 tsp. salt(try 1/2 teaspoon, we happen to like it a little saltier so use a full teaspoon of pink himalayan salt)


Preheat oven to 325

In bowl combine flour, sugar and salt. Cut coconut oil into flour mix. I use my hands to really work it so that it will clump together in nice little lumps.


I line a cookie sheet with tinfoil,parchment is fine too. Sprinkle your "lumps" across the cookie sheet(no need to grease the sheet). I try not to have too many big lumps or all little ones as they do melt together a bit and if the lumps are too big them won't bake all the way through when the rest is done(this is to fix though, I find the half cooked big lumps are quite tasty!)

Bake for 25-30 minutes. (Doesn't hurt to check on it around 20, depending on the size of your lumps,it may bake faster.)

Let it cool and break apart. Store in airtight container.

Monday, February 24, 2014

Justina still Kidnapped by our Government

I am in disbelief.

This is America.


Apparently the State of MA, Boston Childrens Hospital and many others in our Country feel if you treat your child for Mito you are abusing them which warrants removing them from your custody.




The consequences of this horrid situation are far reaching. This will continue in every Children's Hospital. With every Department of Children's Services.


Think very carefully about who you seek medical care from... Whether it is for Mito or Diabetes, because no matter how well educated or licensed your Dr is, another Dr. can call CPS and have your child removed , just because they feel like it, just because they don't like what your Dr. prescribed even if it is part of a protocol established by the NIH. Not even your Mito Specialist is safe anymore.


All Parents in America lost today.

I know this sounds paranoid, who would think our Country would behave this way?

Everyone is in danger of losing their child.

Thank you again MitoAction- you are the only Association that supports Mito Patients in their moment of need. We know you have not had the same amount of patient donations as the other organization, but after your unwavering support for doing the right thing? I hope that changes. I am confident that you would use the donations to help prevent this type of patient abuse.


We need new leadership. It is the only way to protect our families. Growing up I thought something like this could never happen in America, it was places like Cuba, the Middle East, 3rd world countries. I guess we are now one of those "bad" places.

Unbelievable.

Court Day for Justina Today

We will see if Mito is real or not today. (Sarcasm)

We will see if Americans have lost their minds and support Money and Government over humanity.


Hoping for the best for Justina.

Thursday, February 20, 2014

It is My Fault

At some point or another all of us feel it had to have been something we(parents) did to cause this illness in our child.

We are encouraged to rationalize this. To blame "bad luck", "genetics", "unknown causes."


Should we really let ourselves off the hook that easily? No.


Genetics can be random in mutations, but mutations can be caused by environmental influences.


What environmental influences?

Metals. Aluminum, mercury, and so many more. In our deodorants, in our food, in our vaccines. Metals toxicity is connected to everything from kidney disease to cancer.

Chemicals
(Time magazine just did a huge spread on the staggering number of chemicals we feed,bath,breath and dress ourselves in today compared to 40 years ago). From plastic containers to hairspray. Roundup in our yards.

Medications- there is a growing list of medications that cause Mitochondrial dysfunction. I have noticed recently while reading articles that pharmaceutical companies are now including mitochondrial testing when doing safety testing on new medications.

Foods
- Sadly, if our government did not mandate "synthetic vitamins" on our food? The majority of Americans would be suffering malnutrition. Today when we can have fresh strawberries in December. When I can have fresh,live dungeness crab from Pacific NW in Texas.. When we have fresh produce from around the world available at every grocery store. So why are we unable to get nourishment? Thank General Mills and the other big food producers. It isn't food anymore. People don't cook. They buy food in a box,jar,can that can sit on their shelf for the next 4 years. I cannot pronoun 80 percent of the ingredients in a simple granola bar these days. If you cannot pronoun it? Odds are you are not getting the nutrition you need from it.

At the end of day, I most likely did this to Abby.

Medications, chemicals on my lawn,vaccines, fluoride in city water, allergens, chemicals in my home,junkfood ingredients I cannot pronoun.

I should take responsibility. I did it all. Those Shamrock shakes that are basically a slurry of chemicals..That Starbucks coffee,those family friendly meals at restaurants that buy MSG in bulk, Those Twinkies that could outlast our own life span on the shelf. The bubble bath she soaked in..

In our Country today we are taught to read very early. The vast majority of American's have been given the tools to think. But we don't. Why not?

I trusted my government, if they say it is safe then it must be(not so much)
I trusted our Drs. (we know we cannot anymore.)
I trusted that kid focused cereal that claimed to add 100 percent of whichever vitamin in just one serving.
I trusted that if they sold the chemicals at the grocery store or home improvement store, it had to be safe, right?

I was dumb. I was lazy. It was EASIER to NOT think. To turn over those decisions to the manufacturers and government.

Not any longer.

Admittedly, the thinking is painful. It would be easier to blame genetics, the unknown, bad luck. That is not the truth though.

When I started taking responsibility for Abby's health,when I finally accepted that I had been a lazy parent and trusted the gov, the Drs. without question, I finally admitted my guilt. I finally accepted I am to blame for some of this.


It has been more then a journey. Learning about what is in our foods,soaps, medicines has taken an insane amount of time. I am having to learn everything my parents,grandparents and great grandparents knew and learned over a life time in a very short time.

There is lots of work to be done still.


Now that I have taken responsibility and admit that part of Abby's Mito,Mast, Kidney etc is my fault? I have hope.

Each time I eliminate another pollutant from our home, I have hope.

Each time Abby gains a new food I have hope.

Each time I read an article I have hope.

Each time I realize that our Government allows far more toxic chemicals then most other Countries, I have hope.


I could use the same lame excuse as so many others- " Nothing I can do about genetics"

But that is a HUGE lie.


We are causing these mutations. We are to blame.

Today, I feel stronger. Though I cannot make Abby better, I can do what I can to prevent further damage.

Some of us are orchids and some of us are cockroaches. It is time for the cockroaches to accept that bathing the orchids in toxins isn't going to make them better.

I accept the blame, and I am accepting she is orchid, I realize that what a cockroach tolerates will kill an orchid.

Once I accepted and dealt with my guilt, the world opened.

It is my fault, and now I am going to Change.

Tuesday, February 18, 2014

Justina- Still Not Home.

The court date for the 13th was rescheduled for the 24th.


I cannot help but put myself in the shoes of this family. Can you imagine your child ripped from you, and forced to endure treatments that you and their regular Drs know will cause damage? Justina's disease has progressed rapidly from BCH's and CPS's "care". She is not in an appropriate placement. She is not being cared for, and BCH and CPS did this to Justina and the family.

Can you imagine?


Everyday I read another, and another and another story of this happening to good, loving families across America. Some did not see it coming, they trusted their Drs. completely. It isn't just hospitals. IT is schools, hospitals,Drs, and nurses making the calls to CPS that begins this destruction. Surely, Drs, nurses, and schools are well aware that what happened to Justina to could happen to their students or patients if they make a call CPS? Could you make a call to inflict this on a family?


I am incredibly proud of Justina's Father. The courts gag order basically ONLY benefits the Judge,CPS, and BCH. It was harming Justina and her family.

Like the rest of us who love our children, you do what you have to do.

Here is a video of an interview with Glen Beck posted yesterday;Glen Beck/The Blaze

Monday, February 17, 2014

Teff Cold Cereal (corn-free, gluten free, soy free, chemical and color free)



1 cup Teff flour
3/4-1 cup water
3 Tablespoons honey
1/2 teaspoon salt.
coconut flakes
chia seed(or hairy basil which are similar, we used hairy basil because they digest better for Abby)

Mix it together. IF your batter is too thin your flakes will be too delicate and not hold up to "milk". Too little water and they will need to soak a long time in your milk to get them soft enough to eat. I have been using 1 cup to 1 cup of teff and water. The batter is like a not quite thick enough frosting.


Spread it thin on the dehydrator sheets(like you would use for fruit leather)

Sprinkle with coconut flakes on half your sheets. On the other half sprinkle with chia or hairy basil

4-6 hours in the dehydrator. Allow to cool. They should be crisp at this point, if not, continue dehydrating until finished.

Once dry and crispy, break into ragged pieces.

Store in cool dry container.


Use your imagination for topping the wet batter. How about cookie crumbs? All those broken cookies can be crushed into a fine crumb to sprinkle on. If you can have nuts, finely crushed nuts sprinkled on top would be great. We have done finely crushed roasted chickpea and enjoyed them.


You really want to top these. Mostly because without a topping they really look like fish food flakes! :-) The toppings adds a nice texture to them that makes them have a better mouth feel.



I have had a couple batches turn out too thin, don't panic! If the flakes are too delicate for cereal? They make an amazing crisp topping for fruit. I had a batch turn out too hard, so I threw them in the high speed blender to crush them fine and used them to make a pie crust(think graham cracker). So no waste on this one.

I do suggest doubling the recipe to fill a 9 tray dehydrator.

Friday, February 14, 2014

You have a Choice.

I know that for some patients medical interventions are life or death, but for a lot of medical interventions? You have a choice.

When I first realized how much damage the various common Mito treatments were doing to Abby, I panicked! I mean, if you have Mito you HAVE to see Drs all the time,you have to HAVE a Dr. to check every system just in case before symptoms arise, you HAVE to have a zillion treatments or you will die, Right?

After all, all the other Mito families do tubes,oxygen,vitamins, medications,ports,OT,PT,Speech, monthly visits with Specialists with Specialities I cannot pronounce half the time. Some of the interventions include major surgical interventions which means hospitals(germs),incisions(germs),huge amounts of energy to recovery, medications.


I thought for sure Abby was screwed. Without all those Drs. visits, without all the interventions she was going to die.


To our surprise and delight, she thrived without ANY interventions.


Less visits to the Specialists meant less exposure to germs.

Less visits to the Specialists meant less stress.

Less visits to the Specialists meant less energy used unwisely.

Less visits to the Specialists meant less copays which allowed us to improve her diet and environment.

Less visits to the Specialist meant less drama.

Less vistits to specialists gave me more time to cook carefully for her.

Some would say Abby is unusual. Some would say Abby got lucky. What if there are more like Abby, who are needlessly being treated? What if there are others who are progressing from the treatments and not the disease?

On the other side of this are patients like Justina. Justina and many like her THRIVE with the interventions. The medical interventions allow them to live far more fully and help them clearly maintain their health.

The very fact that so many Drs today feel there is only "1 way" or 1 set of treatments per disease is incredibly concerning.

Fact is, even with common diseases there are the "common" treatments and then there are those who need something different where the basic protocol simply doesn't work.

Patients know their bodies. They should have a choice. Patients are humans with very unique lives and unique bodies.

Between Abby's mad crazy reactions and her unique health needs we have found the less interventions the better.

For some those interventions are key to living a fuller and healthier life.

No Dr. should take that choice away from a family. No Dr. should be so poorly educated to think that their way is the only way.

I have noticed recently that the trend is for some Dr.s now feel it is their job to make personal decisions for their patients. From immunizations to mind altering medications and if we disagree with the treatment? They feel we are abusing our children. When the patients disagree? They take them to court and force their opinions on them. That is medical abuse. They are there to provide their medical expertise to their patients, not take custody of their patients rights.

Abby has some truly terrific Drs. They provide her the advice and expertise for her to make educated decisions about her body. None make decisions for her. They make sure she is educated enough to understand the impacts of her decisions. None tell her she shouldn't see other Drs. None tell her how to live. They realize their part in her life and don't get pushy,they stick to medicine. We don't always follow their recommendations. At times I am sure we/Abby have opted to go against their opinion. They accept it is Abby's choice,not theirs. Sometimes they want to know why we did not follow their medical advice. Usually, so they can understand who Abby is and what direction she is going in order for them to provide more tailored medical care that works for Abby. They are the "good" Drs. All have expressed an appreciation that at the end of the day, It is Abby's choice.

So tube or no tube, weekly Drs visits or none- it is the family/patients choice how to live.

You do have a choice, but we are watching our rights as parents erode. No parent should fear disagreeing with a Dr. but most do now.

Maybe I should have titled this "You SHOULD have a choice." Some Drs. are working toward taking our choices away, while others work on being better Drs.

You can pick your Drs. You might have to travel. You might have to move. But the right Drs are out there.

You have a choice.

Thursday, February 13, 2014

Sweet Potato Pudding Cake(Gluten free, corn free, soy free, dairy-free, nut-free)

CAKE
1 cup stewed diced figs(we have been using Made in Nature)
1 cup allpurpose gluten free flour
1/2 teaspoon allspice
1/2 teaspoon salt
1 pound sweet potato (about 1 large), cooked and pureed.
3 large eggs
1 14-ounce can coconut milk(Thai Kitchens is the easiest to find)
1 cup packed light brown sugar
1 teaspoon vanilla extract(homemade only for corn-free)
2 tablespoons coconut oil(melted)or 2 Tablespoons grape seed oil

TOPPING

1/2 cup unsweetened shredded coconut(Tropical Traditions)
4 tablespoons packed brown sugar(Domino's)
1/2 teaspoon salt(we use pink himalayan)
1/8 teaspoon ground allspice

GLAZE
powdered sugar(corn free)
Maple syrup(100 percent and corn free, we use grade B for extra flavor)

PREPARATION

Preheat oven to 350°F.

Coat a 9-inch springform pan with grease(I use grapeseed in a Mr Mister).

To prepare cake: Whisk flour, allspice and salt in another bowl.

Mash sweet potato in a large bowl (you should have about 1 3/4 cups). Add eggs; beat until combined.

Add coconut milk, 1 cup brown sugar, coconut oil and vanilla extract; beat until combined.

Stir in the dry ingredients until combined. Stir in the stewed figs. Spread the batter in the prepared pan.

To prepare topping: Combine coconut, brown sugar and allspice in a small bowl. Sprinkle on top of the cake. Cover with a piece of tinfoil until the final 15 minutes.(it browns super fast! )

Bake the cake until a knife inserted into the center comes out clean, 1 to 1 1/4 hours.

Let cool in the pan for 10 minutes. Run a knife around the edge of the pan and gently remove the side ring. Let cool at room temperature for 1 hour, then refrigerate until cold, at least 3 hours but best overnight.

Mix powdered sugar(aprox 1 cup) and maple syrup, add syrup until of glaze consistency- drizzle the cake and serve.

Wednesday, February 12, 2014

Justina

Last I had heard the next court date is tomorrow Feb 13th.


ABC picked up her story and did a very nice job.

She needs to be at home with her family.


Hoping tomorrow will be the end of this insanity.




Tuesday, February 11, 2014

Secondary,Secondary, Hunting for the Primary.

There are days I find this journey just exhausting.

Then there are the days when I just know we are going to figure Abby out.

18 years and still hunting.


The Immunologist is great. She has a great Mito Specialist. Abby's new Nephrologist is great.

We all love her family Dr.


Yet, still the Primary cause of all these secondary issues eludes us.


We are getting warmer though. Each time we find a great Dr. we can either confirm various issues or they will find another piece of the jigsaw puzzle. Soon, we will have enough pieces to put the puzzle together.


Yesterday we all felt validated. Her Immunologist is smart, like scary smart, he too see's what we see, it is all secondary. We aren't done hunting yet.


Next up, we need to find her a Rheumatologist, like super super smart. Great critical thinking. Thrives on answering out of the box riddles.. So far the Rheumys we have encountered for Abby just know Lupus or arthritis and the minute they see her records they run for the hills!

They really need an online "match" service for Drs. and patients. :-) Sure would make this journey gobs easier.


The secondary kidney disease, the secondary Mast dysfunction, the secondary mitochondrial depletion,the secondary immune issues..

What is the Primary?

Despite my frustration, I know Abby is the lucky one. We can at least control her symptoms with diet and environment. We will keep trying new things, keep reading, keep collecting more puzzle pieces. Right now the best thing Abby has going for her is how stubborn Derek and I can be. We won't give up. If it means cooking chickpea tofu for another 30 years? So be it.

Friday, February 7, 2014

What to Try Next...

We finally found Benadryl where the Compound Pharmacy was willing to use Baking Soda as a filler. Our insurance actually covered this out of state pharmacy.


And she reacted.


On one hand I now know absolutely that her body really hates the Benadryl as much as the fillers. On the other hand in the back of my head I kept hoping that her incessant reactions to medications was because of the fillers. She has no problem with the baking soda. She did not swallow the gel cap(mixed it with sugar and tossed the gel caps, those we know she reacts to plus she cannot swallow them). The first one had some reaction, but we convinced ourselves it was a reaction to something else, some food or a cold.. we gave it a day and tried again- bam! Clearly a delayed Abby reaction. Headache, bone and muscle pain, racing heart, GI upset, proteins up in her urine..By the second dose her body quickly recognized it as something it did not like..


How can one petite body react to so much?


Positive, we now have a pharmacy that can make a medicine without cellulose, or corn, or dairy, or soy, or whatever else they think is a good idea to mix into the medicines.


I suspect we will try a few more medicines made cleanly. Though, I am not particularly hopeful that her body is going to willingly accept any.


It is possible she is simply allergic to benadryl, there are plenty who are(surprising huh? Allergy to an allergy medicine, who would think!).. doesn't mean the zillion other reactions to various medicines over the years were issue with the actual medicine, still could have been the filler. But, not feeling at all hopeful that we will find anything she can take daily to settle her body down.

Abby see's her Immunologist this week, so fingers crossed he has plan C or plan D.. or is it plan E already?

Frustrating for today. I know we will figure out how to get around this too, and she has done very well for 2 years simply by eating the right foods, without chemicals. I cannot help but want that quick fix in a pill though! I get impatient as does Abby. Plus, I worry about should she ever have a life or death situation, I would like to have some sort of plan. Our monthly bills are cheaper then most though, no vitamins, no medicines, that is a positive. :-)

Overall she has been doing alright. Winters are just hard on her. No major setbacks and we are grateful. A new funky rash, more hives then usual, she lost lemons and yeast and a few other things. She has managed to hold on to salmon though, that is a major victory.

We pushed back her monthly dental appointment to give her body a little extra time. Her delayed reaction last month was rough.

Feeling a little stuck trying to figure out how to help her, but that will work itself out when it's ready.

Her body could make this a lot easier by tolerating something in the form of a pill though :-) Nope, always the hard way which is honestly the best way.




Sunday, February 2, 2014

Fake Butter Spread: Gluten free, corn-free, dairy-free, soy-free, nut and seed free..


No dairy,no soy, no corn, no nuts, no seeds? No problem. Whipped fake butter was so easy to make. Finally a "butter" spread for the gluten free toast. It is soft, light and delicate. I probably spend way too much time reading recipes. I LOVE following Paleo and Vegan posters. They are some of the most creative problem solvers when it comes to food. This is a "tweaked" version of some of the various recipes I have run across, and we are are delighted. I may try to mix a bit of coconut yogurt into it to cut the "fat" content. Abby just struggles with fats in general so I think her digestive system will thank me if I can modify this just a bit more for her.


Ingredients:
1/2 cup grapeseed oil(or safe olive oil)
1/2 cup coconut oil
1/2 teaspoon salt(or more to taste)
1/4 teaspoon turmeric(for that yellow color)
OPTIONAL: 1/2 teaspoon Lyle's golden or granulated sugar if you want sweet butter cream.

In a saucepan place oil, coconut oil, salt, turmeric. On low temp warm until the coconut oil is melted and salt has dissolved mostly.
Pour into stand mixer or hand mixer bowl and place in fridge for aprox 30 minutes. You don't want to chill it completely as that would make it hard to whip, so about half solidified.
Whip with mixer until light and well blended(just takes a minute, it is fast!)
OPTION: After whipping I added barely 1/2 teaspoon Lyles golden syrup. Lyle's is unique in having an slightly buttery flavor. I did not want "sweet" butter, but just a tiny bit of sweet to elevate the flavor so it wasn't just fat flavored. If you want to use a pinch of granulated sugar you need to add that at the beginning with the salt.

 
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