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, December 31, 2013

Sad to See 2013 Go...

It was a great year for us, for Abby.

Granted, we have had our share of hiccups, but we also confirmed some suspicions, it is clear that there are some Mast Cell issues and immune issues occurring that explained the increase in health issues, it is not progression, but Mast Cell issues. This is HUGE. This means my Mom Gut was RIGHT(I love it when I am right!). It would have been easier to simply throw in the towel after 16 years of hunting for a diagnosis and just accept the Mitochondrial Depletion as the only issue. We don't give up. We just KNEW there was more to Abby then that.. It kind of frightens me a little to think that if I had quit looking for answers? How very sick Abby would be. Had I just accepted the Depletion I can only imagine how grim my post would be today.


2013 gave me back hope. Helped me realize what some would call nuts, we call determination and hope.


2013 was packed full of moments when I realized how incredibly lucky I am to have an amazing family.



I really hope 2014 is just as full. For once I feel like a grown up. I know whatever 2014 brings, we can do it!


How fortunate I am to have have my online friends. I am in awe of these strong women and men. Of their amazing knowledge. Of their willingness to read through articles looking for clues to not just help their own children or selves, but to help others. So many are fearless in seeking answers. Their willingness to keep fighting even though it might be too late for their child, they fight to protect yours. I am surrounded by hero's.


I will also always remember 2013 as "Justina's Year.". It is now public knowledge that some Drs. discriminate against patients who have Mito,a proven genetic disease. On one hand I am grateful it is no longer the dirty little secret of the Mito Population, on the other hand I don't think anything in my life has horrified me more then knowing the very Drs we trust to heal us are so willing to hurt us.

My hope is in 2014 there are no more cases of false allegations. That we are no longer discriminated against for having a genetic disease. That as a population we are willing to be brave and speak out. This type of discrimination was supposed to have ended with the last Leper colonies- clearly it hasn't.

On a positive, I have witnessed our community unite. As a community we will no longer allow our friends,our community to be punished and discriminated against. I am beyond grateful that MitoAction has led the charge. They are the ONLY patient advocacy organization that I feel actually is willing to prioritize the patient. Their advocacy may protect hundreds of families from suffering what Justina has suffered, what so many others have suffered over the years during the veil of secrecy that was causing more harm then good. I am so grateful that 2013 may be the beginning of the end of hideous and destructive treatment of Mito Patients. For all those willing to advocate, who work tirelessly to speak out, to offer support, to raise funds,that have shared their stories of horror of being abused and discriminated against by Medical personnel, those who are willing to stand in the cold? You are all hero's and I am grateful.

I see 2014 being a great year for my family. I have every hope that we will find a way to open Abby's world more. To control some of the symptoms that too often control her body. I hope I continue to grow, to feel like a grown up. That I never again feel afraid or nervous about advocating for Abby. I hope as our world grows brighter I am able to give more back.

Of course I still hope Obamacare is stopped before it finishes destroying our Country- I figure if hoping did Abby so much good this year, the hope of the majority of American's to protect our Country from ruin has got to have a little power right? :-)

Happy New Years! May 2014 bring health. Strength. Moral clarity. Unity.





Sunday, December 29, 2013

Buckwheat Figgy Cookies(gluten free, soy free, dairy free, corn free)




One of the things that Abby and I have really missed is oatmeal. Well before project elimination started, she and I both got violently ill from oatmeal- only took 3 different servings for us to figure out that we were allergic/reactive to it. So disappointed.


I love oatmeal scotchies(I admit,every now and then I mourn the loss of those chemical,corny, butterscotch chips), oatmeal raisin, oatmeal in my crisp, oatmeal no-bake cookies..


Maybe since we have been without for so long we are finally willing to try to substitute something else for oatmeal, or maybe it is just are absolute love for buckwheat groats that have made us decide to try to replace at least a few old favorites with buckwheat instead. You simply cannot beat the nutritional value of buckwheat and we simply don't use it enough here in the US. So glad we have been able to incorporate buckwheat into our diet. Abby seems to digest it very well.


I toasted the buckwheat groats and then coarsely ground them up in the ninja single serve.(about half their size,some finer some bigger just a quick spin or two better too fine then too coarse,we wish we had ground ours a little smaller for a little less crunch.)

We did figs instead of raisins and I had coconut flakes so thought, why not?


When I tried the raw cookie dough,I admit I just wasn't that impressed. Disappointed that it did not remind me more of oatmeal cookies. But, I found myself tasting again, and again and again, well, you get the point these are easy to fall in love with.. some crunch, sweet, chewy. That nibble of sweet tender fig(or raisin). Then I baked them. Bingo! Still pretty crunchy, but a little softer as far as the buckwheat. Really turned out to be a cookie we are going to want to make often. After eating one(or two or three) Abby and I decided they do remind so a little of the oatmeal cookies we miss, and really the differences make them even better.



1 cup gluten-free flour
1 teaspoon guar gum(you could probably omit but the buckwheat doesn't bind well)
1⁄2 teaspoon baking soda
1⁄2 teaspoon ground allspice(or cinnamon if you tolerate it)
1/2 teaspoon pink himalayan salt
1⁄4 cup coconut oil(solid but not hard)
1/4 cup palm shortening(room temp)(Tropical Traditions)
1⁄2 cup packed brown sugar
1/4 cup granulated sugar
1 large egg
1 cup toasted,coarsely ground buckwheat groats
1⁄2 cup diced and stewed figs(I soak the cut figs in boiling water and allow to stand in the water for 30minutes,drain water)
1⁄4 cup coconut flakes(tropical traditions)

DIRECTIONS

Preheat oven to 350

1) cream coconut oil,palm shortening and sugar together. Add egg, mix well and set aside.

2) In separate bowl combine flour,guar gum, baking soda,allspice,salt. Add sugar mixture and mix until well combined. Lastly stir in buckwheat,coconut and figs.

Chill for at least 1 hour.(If you opt to use all coconut oil you really need to make sure it is very chilled, at least 4 hours. If they still spread add additional 1/4 cup flour to the dough)

Spoon on to cookie sheet and bake for 8-11 minutes. Allow to cool before transferring.

Tuesday, December 24, 2013

Merry Christmas!

Christmas is just extra important in our home. I think in many families with chronic illnesses Christmas has extra meaning.


We can step back and appreciate the joy, love and serenity that the holidays should bring. Our family feels "normal" for a couple days in that we appreciate the same meaning as those who live so very differently then we do. This holiday evens out the playing field.



For us, we step back and give thanks that Abby has done so well. Give thanks that we continue to seek ways to heal her, and not just accept anything less. We never throw in the towel. We fight. That we have the energy and stubborn spirit to do it.


I am grateful that I can keep Abby safely at home. I am grateful that I have the passion and energy to come up with some seriously insane, though tasty food options to keep her system happy. That all of us work so hard to keep her entertained and healthy at home to avoid germs and reactions, and she is thriving. I am grateful that I not only love my family, but I truly enjoy their company above anyone else. Grateful for Derek and his love for all of us. Especially grateful for Sara, she is friend,daughter, and Abby's and my best support. We are so gifted to be a strong and loving family, above all else.


We are fortunate.


My heart goes out to Justina imprisoned at Boston Children's Hospital and I hope this will be the last holiday she is kept so cruelly from her loving family.

My heart goes out to those stuck in the hospital or separated from their families. (My thanks to our Active Duty!)

My heart goes out to the families who have lost a child, sister,brother, Mother or Father this year.


Merry Christmas and hope everyone's New Year brings good health and good fortune.

Friday, December 20, 2013

Mashed Potato Waffle(Gluten free, dairy free, soy free,nut free,seed free)

Abby has been reacting to yeast(we think) so I am playing with some replacements for bread for various dishes. Luckily, she does very well with potato's and potatoes are a favorite and staple in our home.

I am thrilled with these, light and crisp(the inside reminds me of cream puffs) I think I may use them for breakfast waffles next(just adding a little sugar and removing the pepper and reducing the salt). These reheat well which makes them even better as I can make them in advance and freeze.




2 cups prepared mashed potatoes(I mash Abby's with coconut yogurt)
2 large eggs
1 cup rice(or milk of choice) milk(homemade rice milk- there is NO completely corn-free store bought rice milk)
3/4 cup all purpose gluten free flour
½ teaspoon baking powder(Hain's or homemade)
¼ teaspoon baking soda
½ teaspoon salt(still using pink himalayan)
¼ teaspoon pepper
2 tablespoons grape seed oil(TJ's)


Mix it all together and warm up the waffle iron- that easy. I do recommend making sure your waffle iron is very well greased and hot. I disregarded the light on the waffle maker, and instead waited until there was little to no steam left. If you try to remove these too soon, they will split apart. Better to let them go a little longer then you think.


I served these with chicken sloppy joe sauce(red pepper sauce instead of tomato sauce). (chicken and waffles!) A fun and tasty replacement for gluten free bread.

Wednesday, December 18, 2013

Reacting..

We KNEW she would react, after all the stuff is packed full of corn.. but I am just disappointed, and feel a little guilty watching her feel badly because of a decision she left to me.. I really HATE CORN!

Her leg took a week before it bruised and popped up with the rash last time, this time it got busy quickly. Her leg is quite swollen, the pinprick rash is kicking in, and the whole area just looks dark-pretty much like someone ran her over with a car!

Of course the leg is tender and she is struggling to get in and out of bed and up and down off the couch,and hobbling around the house which even that I don't worry too much about..

Yesterday she kept having tachy events off and on where even her oxygen was dropping.. Luckily, they seem to come and go, we have seen this before with her reaction to kombucha- so it is all in the "reaction" category.

Dizzy and distant..


chills..

Headache..

Worst, lots of protein started up last night..


On the positive, she isn't as miserable with the "flu like" symptoms. Which is a huge positive and improvement over last time. The flu-like symptoms are very common for anyone receiving IVIG or Sub Q treatments. The fact that hasn't been as bad is leading me to think it is that her body is that insanely sensitive to corn and other "stuff" it is relentlessly reacting. Just maybe it isn't the therapy that made her so terribly sick, it is the thick and sticky corn they mix it in.. horrifying to witness such a visible and dangerous reaction to corn. So doing the therapy again, did help. It clearly indicates she really is that insanely reactive to corn and other allergens in the mix.


IF she get's no worse, we would consider another round. However, from a long term standpoint, she has enough room on her body for maybe 2-3 more weeks of treatments. The first rash/bruise leg from back in August is still not all the way healed up.. and this leg from Monday? Very angry looking mess. I cannot help but visualize what her body would look like after a full month of treatments.


I have been told by lots of patients that many of these side effects are not uncommon.

So here we are Weds, and just have to see what the rest of the week brings.

Trying to be hopeful, without a lot of hope this is going to work out for Abby.


But, we all want to make sure we do what we can to get this to work. It makes a TON of sense. If you can tweak the t-cells,or how the immune system reacts, it can impact the Mast cells and the Mitochondria possibly- they do all overlap in what they do..

Come Monday, will we do it again? I am trying very hard to wait and see what each day brings.

However, based on the slow building spiral of issues- If I thought this second dose was a bad idea, a third dose? Pushing stupid.

Monday, December 16, 2013

Candied Coconut Macaroon's (dairy free, gluten free, soy free, nut free, corn-free)



Easy and fast. Make the sweetened condensed coconut milk ahead of time as it keeps well in the fridge.
Make sure you use parchment paper and you might even consider greasing the parchment, these tasty little candied goodies stick something fierce! Definitely a must make for our annual Christmas baking. I had some frozen cherries I thawed and drained. Not the same as maraschino cherries, but they were just fine! I am sure you could use a piece of dried fig? Raisin? Dried pineapple? Whatever you have on hand that will offer a contrast. If you can have almond extract these really shine, but no nuts or almond extract for Abby(store bought extracts are all corny.)





Ingredients:

1 3/4 cup Sweetened Condensed Coconut Milk ****
1 egg white, whipped(soft peak is fine)
2 teaspoons vanilla extract
1 3/4 cup flaked coconut
Cherries(I used some frozen I drained well and cut in half)

Directions


Preheat oven 325 degrees F. Line baking sheets with parchment. Set aside.

In large bowl, combine sweetened condensed coconut milk, egg white, extract and coconut; mix well.

Drop by rounded teaspoonfuls onto prepared baking sheets; slightly flatten each mound with a spoon.Press half a cherry in the center.

Bake 15 to 17 minutes or until lightly browned around edges. Immediately remove from baking sheets (macaroons will stick if allowed to cool. Store loosely covered at room temperature.


****Sweetened Condensed Coconut Milk

1 can arroy d coconut milk
1 cup domino's sugar.


Combine and simmer on low. 45minutes to 1 hour. Till it has reduced by aprox 50 percent.

Sunday, December 15, 2013

Grandfather's Soup with Gluten Free Dumplings(dairy-free, corn-free, soy-free, etc. )




Abby and I spotted this recipe in a Russian and Polish cookbook. We were skeptical that it would be any good because it was just "too simple." The introduction to the recipe explained they call it "Grandfathers Soup" because it is simple and easy to digest. Last night it was late and everyone was feeling discontent about their food choices so we gave this a try! So glad we did. Gluten free dumplings are a very different beast then wheat dumplings. The gluten helps hold wheat dumplings together, where gf flours tend to fall apart quickly in fluid. With a little trial and error, we figured out that gluten free dumplings can be made, just have to do it a little differently.

Hands down? This was surprisingly flavorful. The original recipe called for beef broth which Abby cannot have, but chicken worked beautifully. It was easy to digest as promised, and gf dumplings are delightfully delicate and light. A new favorite around here for sure.




Soup Broth
:


1 large onion, finely sliced

2 T grapeseed oil or coconut oil(to saute onion and potato) Tj's grapeseed oil or TT coconut oil.

1 large peeled and finely diced potato

4 cups chicken broth(or beef if you tolerate is great. We make chicken only for Abby)

2 bay leaves

1/2 teaspoon thyme

salt and pepper


Saute onion till they start to brown. Add potatoes, and saute for a few minutes. Add broth, bay leaves, thyme, and salt and pepper. Cook until potato's are tender.

The Dumplings
:

While broth is cooking prepare the "drop noodle." (aka dumpling)

1 cup gluten free flour
1 teaspoon baking powder(Hain's or make your own)
1/2 teaspoon baking soda
1 teaspoon guar gum(we have been using NOW brand)
1 Tablespoon palm shortening(Tropical Traditions)
fresh parsley
salt and pepper
2 eggs.

Combine dry ingredients. Cut the shortening into the dry ingredients. Mix in eggs until dough forms.

Make small balls of dough, I estimate about 1/2 teaspoon of dough(this recipe makes a ton of dumplings, you may want to half the recipe)

Bring broth to a rolling boil. Place a few balls of dough in broth and cover. Cook about 3-4 minutes. They will fluff up in the boiling water. Gluten free dumplings cook faster then wheat dumplings. They also tend to fall apart more easily and breakdown in the broth. It is very important to remove the dumplings as soon as they are cooked. I place them on a plate. When you have enough dumplings, place broth in bowl and place a few dumplings into the serving. Garnish with fresh parsley.

TIPS: I did try to just drop bits of dough in the broth without rolling them into balls. They kind of held together but did break down very quickly. Rolling the dough into small balls(bigger then a marble but not much,they will double in size when cooking)they cooked much better. Keeping the size of the ball of dough smaller ensured the dumpling cooked all the way through but held it's form.

If you have leftovers, do NOT store the dumplings in the soup. Store the dumplings in a separate container.

Friday, December 13, 2013

Mito is an UGLY Disease

poop

pee

diapers

vomit

illness

POTS

fatigue

constipation

cognitive issues

behavioral issues

screaming

tantrums

tears

autism

drooling

seizures

Mast Cell Activation Disorder

gas

diarrhea

blood

pus

Dysautonomia

bad hair day( :-), well it is true, with a teen daughter not having the energy to "dress" or do hair is a major issue!)

bloated

edema

tubes

liquid diets

medications

infections


Shall I go on? We could talk about sex life, marriage, dating, reproduction.. it just gets uglier.



It isn't pretty. It is one of the ugliest diseases. It takes everything. That list was just the shortest version of the "physical list" how about the emotional side?


I appreciate that getting awareness for an unknown disease is difficult. I have been frustrated like many that it seems no one knows what Mito is, and/or our Drs. and hospitals don't "believe" that Mito exists.

We all watch the Breast Cancer Association commercials and all the pretty pink pens,shoes and other pretties that we associate with the disease and their advocacy. Those warm and friendly ladies all looking so tidy,healthy(or at least feminine and affluent) and active while running or walking in their race to find a cure. Kind of a feeling of celebration, happy party kind of feel to it all.. I don't donate to breast cancer awareness because that is NOT the truth about breast cancer in my experience. Breast cancer can rob a woman of her identity, can kill her, the medications rob her of her hair,her energy and health.. it is torturous, far from " pretty and pink". The irony gets me upset every time. I know they are trying to sell the dream that once cured everyone will be happy and healthy, but I am not buying it. It stinks of marketing,packaging- just fake and fake to me equals lies. Surely I am not the only one who figures when folks look healthier and more affluent then I do, clearly they do not need my help? I treasure homemade gifts with all their imperfections, they reflect reality. When someone tries to sell me something so perfect? I am suspicious.

Mito isn't pretty. Having snapshots of cute, happy and healthy looking kids isn't what I see when I think about Mito. Seeing groups of mito patients hanging out and smiling isn't what I know about Mito. Seeing adorable kids with tubes hanging out of them with perfect hair and cute clothes, isn't what I see when I see Mito. IT is like some mysterious advertisement and marketing campaign, some sort of weird undefined social pressure being put on the families, that is trying to hide or suppress everyone who's mito journey is too ugly for the public to see.

Seeing those pictures and feeling that pressure to be a pretty advocate makes me feel there is no way Abby has Mito because we don't look anything like that. Mito(as we know it) is not pretty in our house. Mito is unmade beds. Mito is greasy,matted hair. Mito is comfy but ugly clothes. Mito is drawn tired sick looking faces. Mito is pain. Mito is upset stomachs. Mito is crying. Mito is anger. Mito is alienating. Mito is hidden. Is our version of Mito so shameful they need to make a "pretty" face to represent the ugliness? The higher rate of CPS involvement. The fact that most primary care Drs still do not believe in Mito,well at least our version of Mito(yours too?). The fact that hospital after hospital will not take a protocol letter seriously. It is ugly. Really really ugly and to hide that sends a message of shame to me.

Although I do firmly believe that for Abby her depletion is secondary, At some small level inside me I fear that it could be primary, but I feel like this disease has no room for us. We are too "ugly" to be represented, we don't fit. I am not alone in this feeling.

Why do so many Drs. not believe in Mito?

Why do I feel ashamed that it is on her record?

Why don't Drs take the Mito Specialists and their protocol's seriously?

Is it the fault of the tired,ugly patient? (NO!!!!!)




Frankly, those type of issues are way beyond my pay grade. I am not a Dr, so not my job to make my Dr. believe in Mito, or somehow force them to read literature, or force them to call a Mito Specialist when the Dr. disagrees with the very existence of the diagnosis and Speciality. Out of all the Drs. Abby has seen, I would need a very powerful magic wand to convince most of them. This is an issue for the Drs. to sort out. I don't have the medical education to do the argument one bit of good. Patients don't have the education(in most cases) to even begin to fathom the issues within the Medical Association. Yet, I feel we are being asked to bear the burden.

I get it, patients and their families make the best advocates, after all, we are the ones with the most to lose or gain. but why not on our terms?


When I watch the ASPCA commercials I WANT to give them money. Why? Because they show me the ugly side of animal abandonment and abuse, they show me what they are trying to fix. I want to give my money to help those poor,sick, ugly dogs that NEED me. Why would I donate if they showed me pictures of cute,fluffy puppies? I also want to know that when I donate money that the money goes to those dogs to be helped , not just used to generate funds to build new shelters(office space), or make new commercials.

IF we don't show the world the "ugly" side of Mito, if it all just seems pretty, those like me will save their dollars to give to a cause that needs them. Pretty means their help is not needed. I am a pretty simple kind of person. So maybe I am the only one who doesn't want to give money to people who have more then I? That appear healthier and happier then I?

Dealing with Mito is the ugliest thing most families will EVER have to deal with, why add the burden of expecting them to try to make it pretty too? To make them responsible to teach Drs? Media? The Public?

This disease is ugly. There is no hiding it. Perhaps we should let the world see it for what it is? Because quite frankly trying to put lipstick on the pig is getting us nowhere.

For my entire life I have been told repeatedly, "Just be Yourself". So let us let Mito be itself. Mito is what it is... it is ugly, traumatic, suffering,illness,fear, social stigma,hated, and sometimes deadly. It isn't pretty.

As a family, we have been through a lot. We have dealt with issues that were more life threatening. Why does it make me ashamed to say "My daughter has Mito?" When I think of everything else we have overcome I feel proud. When I think of Mito I feel the need to hide it.

Why feel shamed? We cannot hide the ugly. What good does it do to hide the truth?

If I attempt to teach my Dr about Mito, I know too much. If I don't teach my Dr. about Mito and be a "pretty advocate" for Mito, I am failing at Mito Advocacy. I cannot win.

Some patients think we should "hide" the cases where CPS is called on Mito Families because CPS is part of the ugly. They don't want the "public" to associate Mito with CPS. I disagree. Plus, it is too late, the proverbial cat is out of the bag. We, are the "public". We already know, why deny it? There is a higher incidence of CPS involvement with families who suffer from Mito, it is the truth, and it is UGLY too.

No more secrets.

If it were your family that CPS investigated just because you had a child with Mito? How would you feel when there were so many pretending that ugly did not exist..

Admit it, Mito is UGLY.



The Top Teeth are Done!

Each month she struggles more with each appointment. However, this week was the final repair on the top teeth! A huge milestone!


I am hoping that the bottom teeth are easier. I hate to see her miserable for a week after each appointment. Abby is made of tough stuff though and having her teeth restored is important to her, and us. If we ignore it the health of her teeth they will only get worse which will make the rest of her worse as well.. so it has to be done, but I sure wish it was easier. I am dental phobic and to see what going each month does to her makes it incredibly difficult not to cancel the next appointment. It always causes her kidneys to flair, and the pain in her body.. the fatigue,headaches. the GI upset we tread so carefully with..fixing one tooth has a huge cost to her body. Yet, when she grins and shows me "no more holes Mom!" I get over my own issues- if she can handle it, so can I. Abby has the best smile ever. When she smiles it transforms her face. I think because her muscle tone has always left her looking almost "sad" when relaxed, when she grins? It is like sunshine on a rainy day. Worth it.


The only other new thing is we are going to try the Hizentra AGAIN.


To be honest, my GUT is screaming Don't Do it! Abby's gut is screaming as well. Unfortunately and fortunately we trust her Immunologist. We ran all the scenario's back and forth and he made perfect sense as to why we need to try this again. He is one of the first Specialists ever to really seem to get the complexities of Abby and to understand why we do what we do for her. He gets we need to know the science and his opinion- just one or the other is not enough for us when it comes to Abby.

Of course we have taken HUGE efforts to ensure she is not overdosed this time, hoping that will help reduce the reactions. However, she will react no matter what.. ALL of the sub-q and IVIg treatments have corn. The big concern last time was it the corn or the actual treatment? I don't think I have ever seen her so sick before.


There just aren't a lot of options out there, and none that are any safer. We have gotten by somehow with her with zero meds, zero vitamins.. but there will come a point when she gets hurt, or gets an infection or a zillion other things could happen where she would need medical interventions, and as it stands? It would do more harm then good, the reactions to the IV's or meds so far have been worse then any illness for her, having to go anywhere near a hospital is probably the most dangerous thing that could happen to Abby right now. If it is possible, to "reset" her to do something to reduce her reactions to a more manageable level, we have to try.


It also would help her kidneys if she could tolerate a tiny dose of an Ace. For whatever reason on this whole journey her kidneys and their issues bother me the most.. well, the kidneys and her toenails.. I am sorry, but it just simply freaks me out at some instinctual level to see her toenails die and start growing again- to have a gap, it is very upsetting. I would be thrilled if we could stop the toenails, or the kidneys or she could leave the house without getting sick.. I will take any 1 of those things.

We always manage, and Abby is a rare individual to make the best of everything. But, despite what my gut is saying we all feel the need to face our fear on this hizentra. It is a "chance" to make her feel even a tiny bit better, it is worth it. The decision is even harder in that though she is "grown" she still trusts us, and I think she too would have been happier if I had said no way. She trusts me. Ugh.

Best we are hoping for is no reaction(okay, at least less reaction). IF she doesn't have another major reaction it can take months before we saw any benefit.. knowing Abbys body? Who knows what is coming our way.

I am guessing we feel like someone who is about to bungee jump- everything in your mind and body are telling you "Don't Do IT" but once you jump and have faith it works out fine. So I hope.

Thursday, December 12, 2013

PoppySeed Biscotti(gluten-free, dairy-free, soy-free, corn-free, )

In the past I would have not likely made biscotti for my holiday cookie tray, but with going gluten free (and grown up kids now) we have added biscotti into the cookie lineup. Honestly, a cup of tea or coffee and biscotti? You just cannot go wrong. They are one of the easiest cookies to throw together.

We opted for poppyseed but you could add nuts, dried cranberries or raisins.. whatever it is you like in yours. Normally I would glaze with a lemon glaze to go with the poppyseed or if I was gifting them but plain and simple works perfectly for us. If you can have almonds they would be delicious! My directions are a bit iffy on this one.. I don't usually measure for biscotti, I tend to "wing" it.. I know, bad habit! The trick is just making the dough firm enough to hold it's shape(like a long brick) and no firmer.. gf dough is a bit tricky. Too moist would be better then too dry.


INGREDIENTS:

1 1/2 cup all-purpose gluten-free flour
1 teaspoon guar gum
1/2 cup sugar
1/3 cup poppyseeds
3/4 teaspoon baking powder
1/2 teaspoon salt
2 eggs
3 1/2 tablespoons Palm shortening(room temperature)
1 1/2 teaspoon vanilla extract(almond if you aren't corn or nut allergic)

DIRECTIONS
Preheat oven to 350 degrees F. Line your baking sheet with parchment paper and set aside.

In a bowl, add all purpose gluten-free flour, sugar, baking powder, and salt. Mix together the ingredients. Now mix in shortening and eggs. Lastly add vanilla extract. allow to rest for 10 minutes.
Dough should be rather loose. It should pat together and hold a form but if it spreads when you try to shape it then it needs a bit more flour. If it crumbles it needs a bit of water or more vanilla extract.

Place the dough in the center of the baking sheet and form into a long and relatively flat log with your hands.(Think brick)

Bake for about 22-25 minutes or until the outside of the log is lightly browned
.
Remove and let sit for a few minutes. Slice loaf between 1/4-inch to 1/2-inch thick(thinner will bake more evenly). Arrange the slices, cut side down on the baking sheet and return to the oven. Bake for 10-12 minutes. Remove and let cool for 10 minutes.
If any slices are still too soft you can place them in the dehydrator till dry or back in a low temp oven to dry them.
Store airtight.

Monday, December 9, 2013

Thank You MitoAction!

MitoAction has started a fund to help advocate for Mito families who have been falsely accused of child abuse.


I think I can safely say, the Mito Population says THANK YOU!


Mito Patients daily face family,Drs, friends, even other Mito Patients who constantly accuse them of "faking" their symptoms or disease. It unfortunately is one of the biggest struggles and stigma's of having such an insidious and poorly understood disease.


While I understand the need to provide more research and educational opportunities to Specialists and other Medical Professionals, how many Mito Families will be destroyed and abandoned while we wait years for the diagnosis of Mito to be understood or accepted?


Thankfully, now that the Cancer researchers and other "big disease" Researchers have found that our mitochondria profoundly affect nearly every disease known to man, the research dollars are flooding in(Pharma Companies are dumping serious dollars into research,finally!) and it is time to give donations that previously went to research instead should be given directly to impact the quality of life for Mito patients and their families that care for them.


Today the donations need to go more directly to support the families who are suffering then toward research. Families who are being falsely accused. Who often lose the support of the Mito Community out of fear that to support a falsely accused family may cause unwanted scrutiny on their own families. It has become too acceptable and too common in our Community to abandon a family once they have been falsely accused- that must stop.

Justina had a genetic diagnosis(the current gold standard)there is also a documented family history.(via news,friends,and even a letter sent to BCH via MitoAction) She was being cared for by one of the World's Best Mitochondrial Disease Specialists- if this can happen to her and her family and she was 14, NO ONE is safe. It could happen to ANY Mito family.


Do you want your donation dollars to go more directly to helping a Mito Patient? Today, not a couple years from now via educating Drs who really ought to know better anyway?


Donate to MitoAction:


Your donation to MitoAction's advocacy campaign will be used for the sole purpose of supporting families in need of legal advocacy and to support research and education efforts specific to the task of changing the current problem of parents losing their rights to care for their children due to unwarranted accusations of medical abuse.

For every donation made, MitoAction pledges to create a task force to address this issue and help families around the country in need. Our fundraising goal to support this effort is $50,000. As a supporter, you will also receive regular updates about this project and be invited to contribute regularly. This is a community issue that can only be addressed by a wide base of support!

Thank you for your support!



When I saw this announcement from MitoAction, I felt instant relief. For the last couple years I have watched in horror as family after family has been accused, then support from the Mito community is cut from them, and then our large Non-profits did not have any support systems in place. The very fact that the organizations would not get involved was percieved by me(others?) as them agreeing that the family was guilty. It was a horrible feeling and such a sense of paranoia and panic. The lack of intervention by our leaders was adding fuel to the fire. It not only did not make the problem go away it made it bigger. We all know the saying "secrets make you sick" and this past few years in the Mito Community has proven that saying to me as too close to the truth then even I would care to admit.

To the many families that have "come out" and shared their stories of being falsely accused because their child was diagnosed with Mito, thank you! Thank you for being brave enough to stand on your own and fight this!

To the many families who have been brave enough to support other Mito families suffering these false allegations, Thank you! It is delightful to see families supporting families in the best and the worst of times. Those who are true advocates for Mito families get my applause.

MitoAction has a terrific track record of making every single penny donated to them count. No fancy offices, or big salaries- they put every penny toward advocating for the entire Mito Community.

If you can even donate 5 dollars? It WILL MAKE A DIFFERENCE!

Donate to MitoAction HERE-



I don't know Justina's family. I don't know most of the families falsely accused. What I do know is they are suffering. I feel a deep responsibility to do what I can to ease the stigma of having Mito.

In America, we are Innocent until proven Guilty. With a healthy support system I think many of these families would never face this horror in the first place.

Friday, December 6, 2013

Justina still held by Boston Children's Hospital

Another court date in 5 days, still hope she can be home with her family for Christmas. 5 more days of declining health..



What really gets me about this story? It doesn't matter who your Dr is.. Doesn't matter how connected you think they are, Doesn't matter if you have all the faith in the world in your Mito Specialist, this could happen to your family too.


It just takes 1 Dr(nurse) for this nightmare to happen to you too.


Your diagnosis, your team of Specialists- mean NOTHING to many other Drs., to Hospitals. It seems as though the rest of world of Medicine doesn't think your Mito is real, to the point they won't recognize a genetic diagnosis.. shocking and alarming. It makes us even wonder,is Mito real? Even though we see findings on a report, when we are questioned often and watch Drs. disregard that it exists, it makes the patients question the validity of their disease.


I am more grateful then ever that Abby hasn't needed or could not tolerate any of the Mito treatments.


The thought of needing the ER, even one where the Mito Specialist has rights, makes me cringe. No patient is safe.


How can this happen here in the US? Why are our Mito Specialists ignored by CPS, by the courts? How can a genetically proven disease be ignored?


Even worse? The majority of Mito patients don't even have a gene identified- if they can do this to Justina and reports indicated she has been genetically diagnosed, what about the majority of children with Mito who have no gene identified?


Hoping that a 5 day turn around for the next court date indicates that Justina is on her way home.

Tuesday, December 3, 2013

Snowball Cookies(gluten free, dairy free, soy free,nut-free,seed-free, corn-free, chemical and color free.)





Easy and delicious.

Abby can eat a ton of these cookies(so can I!!!). We were worried that when we made them gluten free and everything else free they would lose their magic, but she gave them a double thumbs up. We have never used nuts in our version so maybe that made removing the rest of the allergens a little bit easier for us.


Ingredients:
1 cup palm shortening, room temperature.
1/2 cup confectioner’s sugar(homemade or corn-free)
1 1/2 tsp. vanilla(homemade)
1 egg
2 1/2cups GF Flour Mix
1 1/2 tsp guar Gum
3/4 tsp salt


Directions:

Heat oven to 400. Mix thoroughly shortening, sugar, egg & vanilla. Work in flour and salt until the dough holds together. Cover & chill for 1 hour or so. Shape dough into 1-inch balls(they are a little crumbly but I worked them as they warmed in my hand they shaped better). Place on ungreased baking sheet. Bake for 7-9 minutes or until set, but not brown(mine cracked a bit when finished which the sugar covers). I only needed to keep them in for 8 1/2 minutes. Let cookies cool slightly – 5-10 minutes. While still warm, roll cookies in powdered sugar. Set on cooling rack to complete cooling. Roll again in sugar once they are cool.

Monday, December 2, 2013

Buckwheat




I think I have covered the nutritional value of buckwheat on previous posts. We have started eating the groats vs just the flour. A little hard for Abby to digest still, but on a good day if they are very tender she is doing pretty good with them. For as much as we love rice, we admit that the white rice Abby does best with, isn't a very stellar source of nutrition. When her gut is flared, we depend on it. When her gut is in good shape we are trying very hard to make sure that we push her a little to digest some good stuff. Buckwheat is a high fiber food which are notoriously hard for Abby to handle. A small serving on a good day though seems to be doing all right. Moderation is key for Abby.

We LOVE the flavor. As Abby says, "From your first bite,if you have never had it before, it is comforting,like eating something you are sure you had before, and cannot believe you found again!" Mild, nutty, it appeals to all 4 of us which really makes a hit for me.

From The Worlds Healthiest Foods website:

"Buckwheat is a very good source of manganese and a good source of magnesium, copper, and dietary fiber. Buckwheat contains two flavonoids with significant health-promoting actions: rutin and quercitin. The protein in buckwheat is a high quality protein, containing all eight essential amino acids, including lysine."



Easy Buckwheat Kasha


1 cup buckwheat groats
2 cups chicken broth/bone broth(water is fine)
1 diced onion
1/2 cup peas(or any veggy, mushrooms are frequently used)
salt,pepper
1/2 teaspoon ground sage


1) Toast you your groats. In a large dry frying pan on med-high heat pour in the groats. Stir them around until they are "toasted" about 5 minutes. You will notice they kind of "pop" open.. nothing dramatic, but it becomes clear when they are done.


2)saute onion

3)Throw everything into a saucepan. Cover with lid and cook till the groats have absorbed all the liquid- about 15-25 minutes.


You can throw anything in with the buckwheat. Treat it like you would rice,millet or quinoa.

We have toasted it and added to muffins, cookies, granola. We have roughly ground it with millet and teff and made a delicious hot cereal.



 
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