Birthday Cookies

So what makes this recipe remarkable? B actually kicked me out of the baking process, asking to finish these on her own. This is the first recipe she has completed on her own-- she has gotten so big! It will be 7 years this winter since this blog began. Thank you for growing and baking with us!

Sunflower Seed Butter Cookies
Ingredients
1 cup brown sugar
1 cup sunflower seed butter
2/3 cup quinoa flakes
1 tsp baking powder
1 Tbsp vanilla extract (we use alcohol free)
1/4 cup culinary coconut milk/cream

Preheat the oven to 350 degrees F.

Line a cookie sheet with parchment paper. Do not grease the cookie sheet!

Mix the sugar and sunflower seed butter together until fully blended.

Add in 1/3 cup of the flakes, stirring while adding. Once fully blended, add remaining 1/3 cup.

Add in remaining ingredients-- stir only until all are mixed in equally.

Using your fingers (this was B's choice!) or a small melon baller or cookie scooper, make balls of dough and place on the parchment paper. Space far enough apart to allow for some spreading. Using a fork, gently press down on the tops slightly, making a criss-cross pattern.

Bake at 350 degrees F for 8-12 minutes (depending on your elevation and how hot your oven runs.

Enjoy!

Now-- eat a cookie!

Baby B's 14: A Salute to Global FPIES Day

It's been awhile, hasn't it? Once more the days and months get away from me! Our household is rather chaotic with our two and five year old residents keeping us on our toes! Can you believe that Baby B is 5 1/2 years old? My goodness, what happened? And Little C is approaching 2 1/2 years old. . . these girls are growing up!

Raising Awareness at the Doctor's Office for Global FPIES Day!

Despite their ages, we still are very much in the throes of food trials and reactions and the lovely grey area that so many of you know all too well. It is very daunting and overwhelming, but I feel a great deal of comfort in the larger amount of awareness that FPIES is getting these days. Hopefully, the awareness will turn to more education, the education to earlier diagnosis and new treatment options, and all of it will hopefully spur more novel research in the process. But I digress. . .

Today, as you are likely now aware, is Global FPIES Day (October 14th)! In fact it is the very first Global FPIES Day (thanks to The FPIES Foundation for sponsoring the day!) and it is really incredible to think that the day has finally arrived and to consider all of the work that has led to this moment. All of the families, all of the stories, all of the victories and all of the heartaches. Since October 14th is the official day, the FPIES Foundation (see www.fpiesday.com!) has invited the entire community, its supporters and its partners to "Find Your Fourteen!"--- to honor the day in fourteen distinct ways. Because this blog is a cooking resource and because I am currently watching my oven timer count down the minutes until chocolate chip muffins become a delicious reality in my house, I have decided to share fourteen recipes that have been life altering for our family-- B and C alike, as well as this chocolate-loving elimination diet nursing mama!

1. Merry Muffins These gave us a bday cake and a snack food. These opened up the doors to the world of allergy baking for me!
2. Arrowroot Cookies/Biscuits: The first recipe to appear on this blog and B's first encounter with a cookie!
3. 5 Ingredient Protein Power Granola Bars: The recipe that got me through many many long nights of my elimination diet with C
4. B's Sunny Bunny Banana Muffins Even though she can't eat these any more since she lost banana, this recipe is one of the blog's most versatile ones, as it can be slightly modified to make cupcakes, muffins and cookies. I love versatility!
5. Baby B's Coconut Crisps or Puffs This is a single food recipe (only uses coconut ingredients) but tastes like it has far more depth than the ingredient list suggests. This is the first cracker that B really enjoyed.
6. Squasher-tots: A recipe for C, one of her first in fact, that took her past purees and into something delicious and attractive. Posting to this blog this week!
7. Happy Heart Pancakes: The first pancake recipe that was not a flop! It took a long time to figure one out, but this is a keeper!
8. Fish Sticks: Again, B has since lost the ability to tolerate fish, but when she tolerated it, this was a great recipe for toddler "normalcy" and for practicality purposes, since I could freeze them in advance
9. C's Crazy Pancakes: Also posting to this blog this week, this is the recipe I have developed for C's pancakes. Siblings are different in many ways, and for my girls, their safe food lists definitely are unique to each!
10. Fancy Big Girl Ganache or Fudge: It is delicious. How could I NOT include this one?!
11. Sunflower Seed Butter Frosting: (scroll to the bottom of the post for this recipe) The first recipe that B actually snuck little bites of when I wasn't looking.  I cried when I saw this!
12. Happy Birthday Mama Safe Cake: A great way to incorporate beets into a delicious chocolate dessert. Among my allergy-free family members, this is the most requested cake!
13. B's Best Brownies: The secret to this recipe? If you make homemade whipped cream (with canned coconut milk and powdered sugar) and use this for half of your milk required in the recipe, these brownies are incredible.
14. Chocolate Chip Chocolate Cookies: Because, you guessed it, everyone deserves a cookie. And in Baby B's FPIES Test Kitchen, we take our chocolate VERY seriously. . . ;)

Even though Global FPIES Day has now come to an end for this year, the momentum does not have to stop. Please join myself, N, Baby/Big Girl B, and Little C in raising FPIES awareness and providing support to other affected families throughout the year. Be the voice!

That "Can" Do Attitude!

Let's carry on with our recipe fun fridays!

One of the easiest recipes I have found in the last year came simply from making a few modifications to the back of a can.

On the baking powder can, there is a recipe for biscuits. Since the large majority of the ingredients are not safe for us, instead of saying drat and moving on, I decided to throw in a few subs and voila! Biscuits!

Can-Do Biscuits
1 cup masa (or other safe flour)
1/2 cup quinoa flour
1/2 cup quinoa flakes
1 Tbsp baking powder (remember-- if avoiding corn, HAIN is corn-free)
6 Tbsp shortening (or coconut oil. We use palm shortening)
1 tsp salt
1 cup safe milk (we use coconut)
1 Tbsp safe vinegar (we use coconut vinegar)

Preheat your oven to 425 degrees F and lightly oil a parchment-lined baking pan. Generally, I use a large lasagna pan for this recipe but a cookie sheet would also work wonderfully.

Mix together the flours,, baking powder and salt. Using a fork, work the shortening into the flour mixture until entirely blended--- you should have a result that resembles coarse crumbs. Next, pour in half of the milk and blend well. Assess the consistency. You will want dough that is able to be rolled out. Pour in anywhere from 1/2 to all of the remaining half cup of milk (I usually use all f it, but sometimes I use a bit less, hence the range). Once milk is blended completely into the mix, THEN add the vinegar and only mix until worked into the dough. Let it rest for 2 minutes.

Form the dough into a large ball and place on top of a large piece of parchment paper. Place a second piece of parchment paper on top and roll the dough out evenly to be around 1/4 inch or just slightly thicker. Using a juice glass or biscuit cutter (or for fun, shaped cookie cutters!) cut out biscuits and place onto prepared baking sheet. Continue to roll out dough and cut out biscuits until all of the dough has been used.

optional: You can glaze these biscuits for a nice effect. All you need is

1 part honey
1 part safe oil
1 part safe milk

You may want to warm up the glaze mixture in the microwave slightly, just so the honey blends easily with the oil and milk. Blend with a spoon and lightly brush onto tops of unbaked biscuits.

Bake for 10-15 minutes, or until nicely golden brown on tops. The thinner biscuits will take less time, thicker ones will take longer. If you like salty things like B does, you may want to sprinkle salt over top of the biscuits when they come out of the oven.

Do these freeze well?  Yes, they do! I prefer to freeze the uncooked dough.

What I will do is roll out the dough and cut it completely into biscuits. Then, I bake the biscuits I want for that day and freeze the rest. To freeze the pre-cut, uncooked biscuits, i simply place them between layers of parchment or freezer paper and freeze them in a covered freezer container. If you are tight on freezer space, once they have been frozen in the container, you can transfer them to freezer bags to store in a smaller space.

When ready to bake the frozen biscuits,  use the same instructions that I described above in terms of temperature and pan preparation. Your time for cooking may vary slightly so you may want to keep a closer eye on this.

FPIES Frustration = New Cookie Recipe

New frustrations have arisen in addition to our regular batch of FPIES issues. At five years old and with no end to this parade of allergy nonsense in sight, I have decided to work on one thing in my control. For all that B deals with everyday, at least I can give the girl more cookies. And since we are decent sharers at our house, well, most of the time. . . we are sharing this with you! From our kitchen to yours, join us in drowning your frustrations in cookies if you can!

Top 8 free, FPIES common trigger free, and completely and deliciously unhealthy.

Chocolate Chip Chocolate Cookies
1 cup sorghum flour (or quinoa flour/millet flour/other safe flour)
1/2 quinoa flakes (or quinoa flour/millet flakes/rolled oats/amaranth flakes/etc)
1/2 cup baking cocoa (we use Hershey's)
1/3-1/2 cup sugar (depending on preference)
1 1/2 Tbsp baking powder
5 Tbsp sunflower seed butter (or other safe nut/seed butter OR coconut manna)
3 Tbsp shortening (We use palm. You could use a safe butter or coconut oil here)
1/2 cup safe milk (we use coconut)
1 Tbsp vanilla (optional)
1 cup chocolate chips (we use Enjoy Life brand)

Preheat oven to 375 degrees F. Line cookie sheets with parchment paper or lightly grease a brownie pan if making bar cookies. This recipe will make: 2 1/2 dozen medium to large size cookies OR 1 13x9 pan of bar cookies OR 2 8inch circle pans of bar cookies.

In a large bowl, combine flour, flakes, cocoa and baking powder. Set aside.

In a medium bowl, combine sugar, sunflower seed butter, shortening and vanilla.

Blend sugar mixture into flour mixture. Once well blended, add milk and chocolate chips.

For an easier time rolling cookies into balls, you may want to refrigerate the dough for an hour or two. If you simply cannot wait that long (like those in our house, haha), you can scoop the balls unto the pan with a cookie scooper or use your hands to roll into balls. Just be aware that it gets a bit messy! The dough here is similar to a traditional peanut butter cookie dough--- you will need to squish each ball down into proper "cookie formation" just as you would if you were making traditional peanut butter cookies (this recipe is nut free of course-- just using this as a point of reference!)

If making bars, simply smooth into prepared pans.

Bake at 375 for 10-12 minutes. Allow to completely cool before cutting bars or eating cookies. Enjoy!

Coffee Cake Follow Up-- Fancy, Big Girl Style

Last week I gave you B's new muffin recipe. Well, sometimes, you may be craving something a bit more than muffins! So today we will talk about how easy it is to turn this muffin recipe (and many other muffin recipes) into a coffee cake version for more of an adult presentation.

To start, like all of these recipes, this is a version of something that looks and for the most part tastes like a coffee cake. This may not be like the ones you buy at the store but it is close!

The first step is altering the initial recipe. For the sake of ease, let's use last week's recipe which is here. You really do not have to do much, in fact you don't have to change it at all. But in my opinion (take that for what it is, haha), there are a few things that you can do to make this more like a traditional coffee cake.

One thing you can do is, instead of just using a cup of unaltered berries, is to dice them into small pieces (even the blueberries-- I cut them into fourths), put them in a separate bowl, add 2 Tbsp of white sugar/cane sugar, blend, and let them sit in the fridge for an hour or so before starting the rest of the recipe. When you prepare the recipe, simply add this mixture instead of unaltered berries. OR, for better results, you could cook this mixture (berry mixture) down in a saucepan until it becomes more like a syrup and then when you get to the spot in the recipe for the berries, add the syrup that you made.

The other thing you can do, either by itself or in addition to the alteration above, is to add a coffee cake-like topping. This is super easy and adds a nice sweet crumb topping. All you need is 4 parts brown sugar (or coconut sugar) to 4 parts flour to 3 parts shortening (or butter, or coconut oil or coconut manna).

Translation for this recipe?

In a small bowl, blend:
4 Tbsp brown sugar (same thing as 1/4 cup)
4 Tbsp of safe flour
3 Tbsp of shortening (I used palm)

The mixture should be crumb-like. Once ingredients are blended together, set aside. Prepare the rest of your recipe according to the instructions and pour into prepared pan. Ensure that the to of batter is relatively smooth. Using your fingers, sprinkle crumbs over top of batter until entire top is completely covered. Bake according to original recipe instructions. You may want to peek in on it a bit more frequently to ensure that the topping does not burn. If the topping does start to appear like it will burn before the cake is done, you can do a few different things. (1) make sure that the cake is closest to the center of the oven and the top isn't too close to the heating element, (2) cover the cake with foil (being careful not to disturb the topping), (3) decrease the oven temperature and increase your baking time to correspond.

You could also do these alterations and simply keep the recipe as muffins. I decided to make a coffee cake version because it had been five years since I had one of those yummy bakery coffee cakes and for whatever reason, I woke up with a craving and decided I was going to make one. ;) Enjoy your "adult" Sunday breakfast treat and if you can have coffee with your coffee cake, drink an extra cup for B, C, and I!!

Berries for Breakfast

As many of you can relate I am sure, getting our kiddos to eat can often be a struggle. Between normal age and stage pickiness and all of the issues that arise from reaction pain/anxieties, it can seem like an impossibility at times to get through three meals a day.

Slowly, B has been eating less and less and is now at the point where she is refusing breakfast 5 of  days a week, entirely. I told her that I would make her whatever she wanted if she would start trying to eat and she decided on berry muffins. Happily, an easy choice! This is what I came up with:

B's Merry Berry Muffins
1 1/2 cups quinoa flakes (or amaranth flakes, millet flakes, or rolled oats)
1 cup sorghum flour (or corn flour, or wheat flour, or millet flour, etc)
1/2 cup sugar (I used brown sugar but coconut sugar would be yummy)
1 1/2 Tbsp baking powder
4 Tbsp sunflower seed butter or safe nut/seed butter (or coconut manna/butter!)
2 Tbsp palm shortening (or safe nut/seed butter, or coconut manna/butter)
1/4 cup safe oil (we use canola)
2 Tbsp honey/maple syrup/coconut nectar
1 - 1 1/2 cups safe milk (we use coconut)
2 Tbsp coconut vinegar (or other safe vinegar)
1 Tbsp vanilla (OPTIONAL)
1/2 - 1 full cup finely diced berries of choice (1/2 cup was fine for us)

Makes 36 mini muffins and one 4x6 coffee cake (for coffee cake recipe, stay tuned for next week. There are some alterations here) Preheat oven to 375 degrees F and prepare 36 mini muffin cups (approx 12 regular sized muffins).

In a medium bowl, combine flours and baking powder. Add in sugar and blend well. Add oil, then shortening and sunflower seed butter. Pour in the honey. Mix all ingredients well and then blend in the coconut milk until mixture is well blended. Add berries!

Combine vanilla into mixture completely. Add vinegar and mix JUST until blended in.

Using a small cookie scoop or Tablespoon, scoop spoonfuls of batter into each muffin cup, filling each 3/4 to completely full. Bake in a 375 F oven for 10-15 minutes or until muffins are golden brown and spring back when you poke them gently.

These may look done but feel a bit soft when you poke them in the center. Still, remove them from the oven and keep them in the pan as they sit on top of your stove to cool. They should set up just fine.

Next week, I'll give you the scoop on how to do a few quick alterations and to create a beautiful coffee cake to have for the more adult presentation, in case you are getting sick of muffins ;).

Chocolate Chips: Are They REALLY Ever Just Optional?

I believe that, in FPIES, as in most things, we get bones thrown to us once in a blue moon. Something to make the road a little less difficult, to give us a break, whatever it may be. Often I talk about the amazing support of the FPIES community, or some other life line that helps us to get through. Tonight, I am here to talk to you about something slightly more superficial but all the same, truly lovely-- chocolate.

That is the bone that we have been thrown. And I am so grateful for it.

I can still eat basic cocoa on my elim diet (as well as Enjoy Life Chocolate chips) and B can eat cocoa and EL chocolate chips also! I really hope that little sis C can join us in our love of this sweet sweet treat in the months to come!

Because B does not have a ton of safes and because treats are not super common in her diet, chocolate is happily our go-to, our "Add-in" to make a food more enticing so that she will eat it. Now don't get me wrong-- I add very little at a time, and I don't put it in everything, but baked goods get a nice dose of it about 50% of the time at our house!

In honor of this delightful treat, here is our current waffle recipe. And a note-- I cheat with waffles and use this pan instead of a waffle iron. Not quite the same, but so much easier to clean! Chocolate chips are of course optional (sometimes I sprinkle the chips into individual waffles so that some are plain):

Wonderful Wake-Up Waffles (also great as pancakes!)

1 cup sorghum flour

1 cup quinoa flour

1/2 cup quinoa flakes

1 Tbsp baking powder

1/2 cup brown sugar (or coconut sugar or maple sugar!)

2 Tbsp maple syrup

1/4 cup canola oil (or other safe oil)

1/4 cup sunflower seed butter (or other nut/seed butter)

1 1/4 cup safe milk (we used coconut) 

1 Tbsp vanilla extract (optional)

Chocolate chips/ cut fruit/ whatever you might want to put in your pancakes or waffles-- optional

If using a skillet or waffle iron, you will need to lightly oil the surface. I like to melt a bit of coconut manna in the skillet and then pour it into the batter if there is excess.

Mix flours, flakes, baking powder, and sugar in a medium bowl. Blend well. Add canola, maple syrup and sunflower seed butter. Blend all ingredients well. If using chocolate chips and/or vanilla, blend into mixture. As soon as the pan/skillet is ready, add milk to the mixture, blend thoroughly and then pour into prepared pan/skillet. Cook as you would typically cook waffles or pancakes. Just a note-- your batter will not be thin--- it will be thick and need to be thick in order to hold up.

Enjoy!

Fifth Birthday

Another birthday has come and gone. B is now getting so big! She still loves being a big sister (most days), loves arts and crafts, loves trucks/cars/any and all vehicles and legos. . Now she goes to gymnastics class twice a week and it has been a great outlet for her. Still homeschooling but we are considering public kindergarten for the fall. She has truly become an amazingly spirited girl and a very strong one, a strong girl who still very much deals with allergies and FPIES everyday. 

This year's birthday: Lightning McQueen and ice skating. Never a dull day! Happy birthday to my sweet girl!! I can't wait until May for little sis to turn two!!!

B's Best Brownies

Please check out the recipe at the end of the post!! :)

I promised my husband that I would get better at writing these things down.

Life has been so nutty with both of the girls busy at homeschool and tumbling, in addition to the routine allergy nonsense that we have going on daily. Most of my recipes end up in my head or on the back of some old medical billing envelope, typically written in crayon. . . not very useful to anyone but myself when the recipes end up there!

So in true fashion of this blog, this is a treat recipe--- I thought our lives needed some sweetening up these days. With quite a bit of chronic issues and then two major ER reactions in the last month, B needed a new treat. Brownies, it is!

As is with all other recipes on here, you do not have to stick to the exact same ingredients. Great subs for sorghum flour include millet flour, rice flour, corn flour, wheat flour (just be aware that if you are using a gluten flour, it will rise more than my original recipe, so just keep that in mind). . . any "stand alone" flour would be great. Though I have not yet tried it, I strongly suspect that you could do this recipe completely with quinoa flour or amaranth flour. If you went that route though you might want more sugar. . .

Also, for corn free, keep in mind that you can use HAIN brand baking powder if potatoes are safe or you can make your own baking powder out of baking soda and cream of tartar. Another option is using vinegar-- I would use 1 Tbsp vinegar (we like coconut vinegar) in place of the two Tbsp baking powder. It may make the brownies a bit denser or fudgier, but who doesn't like a fudgy brownie?!

The vanilla extract and chocolate chips are optional. Instead of sunflower seed butter, you could use the same amount of coconut manna or coconut butter, or a different nut butter or seed butter. We used coconut milk with this recipe but any safe milk would likely be fine. Remember that you CAN make milk from quinoa as well as other seeds!

B's Best Brownies
1 cup sorghum flour
2/3 cup quinoa flour
2/3 cup cocoa powder
2 Tbsp baking powder
1 cup brown sugar (coconut sugar is a wonderful substitute for this)
1/3 cup sunflower seed butter
2 Tbsp warm water
2 Tbsp safe oil (we use canola)
1 cup coconut milk
1/2 cup chocolate chips (we use Enjoy Life) OPTIONAL
1 Tablespoon vanilla extract OPTIONAL 

Preheat the oven to 350 degrees F and lightly oil a 9x9 inch pan (this makes a tall brownie--- about 1.5 inches thick. If you wanted a thinner brownie, you could use a 9x13 inch pan).

In a medium bowl, combine flours, cocoa powder, and baking powder. Add sugar and blend well. If using chocolate chips, add them here!

Blend in sunflower seed butter, vanilla, oil, and water. Once oven is fully preheated, add milk and stir until just blended. Pour/scoop batter into prepared pan immediately and smooth until level with a spoon. Bake for 25 minutes at 350.

Another option for your chocolate chips is to not add them to your batter, but to spread them over top of the hot brownies after you take them out of the oven. One chips start to melt, you can spread them over top of the brownies like a frosting.

Enjoy!

Baby B's 200th: One for the Peg Board

Dealing with a rare diagnosis, doing everything in your power to help your child/children, navigating doctors appointments/reactions/kitchen debacles with strange ingredients. . . let's face it. FPIES is HARD. Its ok to say it! All of you families that live this day in and day out, you are far stronger than you truly realize and really ought to be commended for all that you do!

As we move through the days,months and years with this diagnosis, we have encountered pediatricians, specialists, medical support staff and allied health providers. We have read countless medical journal articles, shared stories on support forums, and accessed essential information from support organizations. All of these encounters and experiences provide us with an opportunity to gain tools, tools to add to our "peg board" in our work shop, as it were. But it is our job to identify the tools and to use them to the best of our abilities and to the best of each tool's usefulness.

Imagine a house without a door. You are inside and need a way to get out-- you have a door that needs to be hung and its hardware. Your tools include a wrecking bar, a ratchet, and a saw. You can certainly use any of these to cut or smash a hole in the drywall, and the wrecking bar is likely to get you through the exterior wall as well. But what you end up with is not a door, but rather a hole in the wall. Then, someone comes along and hands you a drill. Suddenly, you can cut that opening with your saw and you can use your framing, hinges and screws to attach that door. You don't balk at using the drill because it isn't green or pink or red, or it came from Home Depot rather than Lowes-- if it works, it gets used. And that hole becomes a door.

That is the thing with tools-- they are typically only useful if they are being USED. I encourage all of you, whatever place you may be in in your family life with FPIES, look around at the tools being offered. Sometimes they may be in places you would not expect, sometimes they are handed to you, no expectations, no questions asked. It is our tools that will power us through the dark nights, on to more information, on to opening doors that seemed helplessly stuck. A solution starts somewhere and it is the tools, not the color or brand or location of the tools, that will bring us closer to the answers we so desperately need for our children and our families. Let's connect to one today:
 

A Place on the Map

We love maps. In fact, our homeschooling curriculum (self-created) is based on geography. More on that later. . . So, yes. The girls love maps, even little C, who is now, wait for it. . . 18 months old! But despite our love for maps, we have often felt like a family without a compass, navigating the chaos that we know to be FPIES. We have often felt "off the grid" when we go through periods of family life seeming, well, "less than normal."

Tonight, however, we find ourselves looking at a map, and guess what?! We are ON it! That little flag? That's us! I am talking about The FPIES Foundation's ground breaking new release--- a global registry for children and families affected by FPIES! All of these years (we've been active in the FPIES community for 4 years now) of hoping that someone could share the information from the families living with this condition in an organized way with the doctors trying to help our children, and now with a click of a button, this is all possible. The FPIES Foundation has figured it out!

The other thing that B, C and I love (Daddy loves it too!) is that this registry doesn't just stand alone-- it is actually part of the National Institute of Health Global Rare Disease Registry program through a program called "Connect," by Patient Crossroads. Our information is not only going to make an impact for families but it will also make a large impact on a far larger scale.

Click on the button to connect and add your little one to the growing group on the registry. Find your place on the map-- can you find us? We've been looking for you!

My Good Girl

Tonight at bedtime, we were reading to the girls. Reading is a big fun time at our house and we had a nice stack of books this evening, including one of my favorites "Everywhere Babies." The book is very cute. B got it for her first Christmas and I knew that C would love it the same way B did, and I was right. The funny thing is, the last line of the book always brings tears to my eyes: "Everyday everywhere babies are loved. For trying so hard, for traveling so far, for being so wonderful, just as they are."

My girls try so hard, so very hard.

In the last year or two, B has really struggled with behavioral and sensory issues during reactions and reaction recovery. She has pain, a lot of pain, and she exhibits a lot of disturbing behaviors that only present themselves during a reaction or in the immediate recovery period. Behaviors that I haven't seen since I was working in residential psychiatric settings. Thankfully the majority of these have occurred at home but there have been a few to occur in public settings.

Every time I see her that way, my heart breaks.

My girl gets lost inside of herself, lost behind tactile defensiveness, behind that horrible scream. I sit with her, as close as she will let me sit. I offer to hold her, I offer to bring her water, blankets, stuffed animals, anything. She continues to scream, thrash, claw at her skin and clutch her stomach.

This is my good girl, the girl that loves to hug her baby sister, the girl that gently kisses each of the newly opened daffodils in the spring time, the girl who snuggles up to me to read a good book.

Eventually, she allows me to give her benadryl and takes a sip of water. Eventually, she starts to "come down." Eventually, she allows me to hold her and her screams turn into tears. The clock keeps moving and the morning comes. After she wakes, she asks why I am tired. Why we can't drive anywhere in the car today (because I am too tired to drive). I remind her that we were up together in the night and she says she doesn't remember. I believe her-- she doesn't act or look as though she remembers.

When B was a baby, I would sing her a little song, "She's a sweet girl, such a good girl, such a happy girl--- Mama's happy girl." She called herself "happy girl" as a young toddler. She loved hearing the "happy girl song." She has had many, many ups and downs and been thrown quite a few loops, but inside, I still see glimpses of my "happy girl," even in the middle of her darkest nights.

So why am I writing about this? Why now?

I have kept a lot of this to myself, trying to maintain some dignity for B, and to be honest, out of insecurity. Here I am, trained and well-versed and practiced in de-escalation strategies, yet I can't figure out how to help B at the times she needs me the most. All I can do is to be there with her and to wait, wait it out.

Maybe that is the point to this post. I remember when she was a baby and she would scream for hours upon hours. I was scared, bewildered, and sometimes I would cry right along with her. But I remember thinking to myself, even if I can't figure this out, even if I can't fix this right now for her, I can hold her. I can be with her. And four years later, that is what I am still doing.

My hope for her is that we can find a way to help her cope. I want to find something to take away the pain or at least take the edge off for her. I don't like that her world feels so scary and so painful at times, times that happen far too frequently.

I want these things because I want the world to see her as I do-- my good girl. Not a "behavior problem" or a "difficult child," but as the good girl that she is. The girl that I know will grow up to do wonderful things and that will change her world, just as she has changed mine.

So if you know B, because of this blog or because you have had the good fortune of meeting her, I hope that you will think of her for being this good girl. I hope that she has already changed someone's world through her recipes. I hope that she has changed someone's heart by their reading of this post-- maybe next time they see a child having a meltdown, they will think of her and how hard she tries and how scared she sometimes feels. If we can accomplish this, then her work of changing the world has already begun. Thank you for supporting B.

Happy Birthday, B!

We just recently celebrate B's fourth birthday! I will post more later, but just some pictures of this year's cake and muffins. Note the shark fins in the muffins and the pink sea turtle. . .

Rare Diseases Day: Let's All Dare to Be Rare!

Another year finds us at another Rare Diseases Day. This is really an incredible day to unite with other children and families affected by rare diseases and the challenges that entails. Being affected by a rare disease, whether you have the diagnosis or whether a loved one has it, can change your entire life style, your entire reference for what is your family's personal "normal." This year's theme is "Rare Disorders Without Borders." When I hear that, I can't help but think of the amazing families and medical professionals we have met along our children's journey with FPIES.

It is an interesting journey indeed, and along the way we have met people that we never may have crossed paths with otherwise. And now I can't imagine our lives without those encounters. Each person along the path has the opportunity to touch others on the road, to lift someone up, to affect change on both a large scale and on a personal level.

I have seen a lot of families come and go. It is very encouraging to see others moving on, especially when it is because their children are outgrowing their FPIES symptoms or because their diet has become far more manageable. To be honest, it is hard to be the ones not moving on. Sometimes it feels like being left behind. It doesn't detract from any joy I feel for the other families, however. Knowing these feelings, I cannot say enough how appreciative I am of the families that do not forget, those that may move on, but do not leave others behind.

Just recently, I have seen a handful of mamas posting about their children's successes with outgrowing FPIES. It is so encouraging seeing these families returning to the support groups that once lifted them up to do exactly that for other families-- to lift them up. To encourage. To tell them that it doesn't stay dark forever, that there is hope, that there is change.

I know there are also families that have moved away a bit from the groups because their children are older but their FPIES symptoms remain unchanged. As a parent of an older child with FPIES, I know how hard it can be sometimes to stick around and watch others move forward as our children seem to be stuck. But these families still reach out, continue to use the knowledge they have to share with others, in hopes that the next family will be helped, maybe they won't have to reinvent the wheel. . .

The doctors and other health professionals that we have been so fortunate to have care for our children have made far more of an impact than I think they realize. Yes, I feel like my children receive excellent medical care. But beyond that, I feel like my children are supported by practitioners that care about them, not only a simple diagnostic code on a page. My children's quality of life, developmental milestones and personalities are all considered. When B was a baby, her old doctors viewed us as a problem-- it was even written that way in her chart. They did not view her situation as something requiring help or answers, even when she arrived unconscious at the ER just a few weeks before her first birthday. With B's current care team (whom we love), they view her and her sister as people (tiny, adorable people) that deserve the same dignity, respect and consideration as any other child or adult.

So as we celebrate Rare Diseases Day, let's all "dare to be rare"--- instead of moving on without looking back, or instead of seeing a child as nothing more than a diagnosis, let's reach across the borders that these choices create and remember how we felt the first time someone in this community connected with us. Let us all remember how to lift one another up, how to be a light in someone else's darkness, and how to see each child as a special little person, unique in his or her needs and abilities, and not simply a name attached to a diagnosis. To all of you already being this light, thank you for making the choice to dare to be rare. As I always say, the road of FPIES is a difficult one, but thank goodness that the company is great. Happy Rare Diseases Day!

Non-Food Preschool Craft Recipe: Fingerpaint!

Art supplies can drive us crazy, especially the non-toxic food based ones! I can't tell you how frustrated I get by the wheat and soy exposures in various children's art supplies. Since I try to minimize frustration, I just make my own. Mine are prettier anyways. . .

This fingerpaint recipe is not my own but it is the best I have tried thus far. It really turns out beautifully and is super easy to make. Just go to this marvelous woman's blog here! The blog title says it all!

A quick note on ingredients! Not everyone is ok with corn starch! But that's ok! There are other starches! The key to remember when subbing another starch in for corn starch is that not all starches share the same degree of heat tolerance. Corn starch is a very stable starch but arrowroot for instance, is very finicky about heating and breaking down when over heated. If using an alternative starch, you may want to heat at a lower temperature and watch it like a hawk. Once it acheives a slightly thicker consistency and is steaming, take it off of the burner and continue to stir consistently until it becomes as thick as a thinner pudding. It will thicken further upon standing.

B's Top 10 Homeschooling Sites

So yes, we are just newbies, but in true allergy mom fashion, I have been doing a ridiculous amount of research. We have chosen to approach homeschool in a Montessori-inspired direction, so many of the resources I have been following are of that persuasion.

1. Q & A about Montessori Homeschooling Concepts
2. Living Montessori Now 
3. This is the best site to date-- activities separated by category, how-tos. . . perfect for those starting out!
4. Images of work trays
5. Montessori on a Budget Pinterest Board
6. My Montessori Journey
7. Montessori for Learning
8. A Great Article for Dealing with Sensory Issues and/or an Intense Little One
9. Great Sensory Activities!
10. Itty Bitty Love-- A Blog from A Montessori Teacher

Apricots, Sea Turtles and Getting Schooled

Wow, its been forever. I now remember why I didn't start my blog until B was around a year old--- babies are super awesome but allow absolutely no time for blogging! ;) That's ok-- I love all of you dearly, but seriously, B and sunshine-y Baby C happily take center stage in my heart and daily schedule.

So what's new? Baby C has been standing and cruising a few steps since just before turning 8 months old (we are in so much trouble, haha) and is a sweet little dream. She is a stinker, however, just like her big sis. I wouldn't have it any other way. She does nap more than B ever did, but naps still only amount to roughly one, one hour nap every 2-3 days. My kids never got that memo about how small ones are meant to nap. . . I think she is simply far too interested in what B is up to--- she completely adores her big sis and the feeling is about 85% mutual. B is enjoying our first few rounds of home school and I am slowly taking in the learning curve that teaching your own kiddos requires. I think this is going to be a great way for her to get a start on structured schooling and she is certainly excited about the plans we have for the weeks ahead. We are taking it slowly-- she is a pint-size one after all. The trickiest part so far for mama seems to be keeping Baby C occupied and feeling included while school is in session. Hopefully, we will all adjust soon!

With B's birthday coming up in the next few months, that is a hot topic around here. Her second birthday cake was a pink hippo, last year was a frog and this year, she wants a sea turtle cake. And she will have a sea turtle! I even got a little chocolate fish mold to make little fish for decorating the cake platter! I will also be making mini cupcakes with frosting-formed anemones on top. I know-- its crazy. But birthday cakes make all of the hard recipe creation work really pay off. And this cake will be epic-- she is turning four, after all!

FPIES/allergies-wise, we are still in a bit of a tricky spot. But we are trying! After eggs (mega classic FPIES fail), salmon and starfruit being all a bust for B, we are moving on to cauliflower this week and hopefully apricots next week (they were an awesome deal at trader joes-- I couldn't pass them up!). Trials are tricky for B because we see a lot of random reactions between accidental exposures (she is pretty contact sensitive) and unexplained instances. But because of the lack of formula and because her diet is still a bit limited in certain areas in particular, we have to keep going with trials for now. The good news is that she is currently INTERESTED in trials, so that helps to keep momentum up.

For C, we are still striking out but we are going pretty slowly, so hopefully it is just a matter of time before she gets her first safe food. Currently, buckwheat looks promising, but I can't get her to eat more than a teaspoon-- she is fairly repulsed by it, hahaha. I think she will be venturing into the land of apricots next week as well and perhaps if those can pass (or if apples pass, since those are up next) I can bake with buckwheat flour for her or at least mix the fruit with the cream of buckwheat for a bit of a tastier experience. I also have those mesh food feeders-- maybe baby popsicles are in her future?

C is being looked at for an FPIES diagnosis and we are keeping some IgE considerations on the radar due to her reactions through my milk and a few suspected airborne instances, as well as multiple contact reactions. It is a lot to consider and my nursing diet still is extremely restricted, but that said, I feel like getting a handle on my diet early on in the game has helped her. She is almost 20lbs, is meeting her milestones and is just so happy a large amount of the time. I would fortify air and give up all food if I could still nurse her and keep her moving on this path! ;)

Its so funny that even though this is the second time around, we still have a lot of periods of uncertainty and struggle with the emotional side of things.We know what to expect, sure, but it still hits just as hard when I see her react, etc. And I am still hoping for a few foods before her first birthday. In my heart, I know it is ok to go at her pace, and that this is not about hitting everyone else's "norms," but allowing things to happen at the right times for HER "norms." In fact, I am already starting to plan the birthday items. I found this adorable birthday cake toy-- it is perfect size and the little items in it are just the right size for little hands. Plus, the price wasn't too shabby! I also got some great inspiration from the mamas I know who have navigated the food-free festivities before on here and here. Either way, it will be a great day and she will be surrounded by everyone who loves her and who she loves. Doesn't stop me from plugging for apricot sorbet however. . .

Be sure to check the next post(s) for our favorite homeschool resources and a few tips and tricks we have learned so far (we are still newbies!). I will do my best to keep you guys apprised of updates!

An Unlikely Adventure, A Worthy Cause: I Choose B

Let me start by saying, I love the idea of homeschooling. I think it is a great choice for a lot of kids. I have some amazing friends who homeschool and I admire them greatly! That said, I never thought I would be homeschooling any of my children.

I prepared for it, since B was born. I always wanted to be aware of my options and thought that homeschooling resources could be called on to supplement education as well as serve as the main source of education if the situation necessitated this (poor school system, moving around a lot, variable needs of my children). Now, as I am getting ready to dive head first very soon, I am still a bit surprised to have arrived here.

We have great schools in our area, and a large diversity in options. But after a brief start and a hasty finish this fall, we have come to the conclusion that B's needs right now are calling for a different path, a different setting. Homeschooling seems to be a wonderful step for my girl and it allows us to take reactions and other medical setbacks a bit more in stride with the help of an adaptable schedule. She is up and down quite a bit with symptoms and earlier this fall, had a lot of days when she was complaining of being in pain constantly. Nights of poor sleep and a variety of skin and GI symptoms brought me to the conclusion that we need to work with B a bit more, rather than try to get her to push through her pain to conform to a school setting right now. To some of you, it may sound a bit extreme, but to be honest, I felt like I had to choose between our initial intentions and between B's reality. And I choose B.

To help us on our journey, I have entered this amazing giveaway at a fabulous site, "Living Montessori Now":
http://livingmontessorinow.com/2012/11/29/huge-giveaway-alisons-montessori-products/

I hope we can win some of the great prizes to help with our home classroom! Whether we do or not, please keep posted for an upcoming post here about our schooling adventures and the variety of Montessori inspired workboxes and activities that we have integrated into our daily life. We are keeping it sensory with sensitivities in mind! See you soon!

Version 2.0-- Cornbread

A new version with a touch more nutrients and with a bit more of a moist texture! Enjoy!

Corny Preschooler Cornbread Ver. 2.0
2 cups masa (corn flour)
1 1/4cup dry polenta mix
3/4cup quinoa flakes
1/2 cup sugar
2 Tbsp baking powder
1 tsp baking soda
1 tsp salt
2 3/4cup coconut milk (or other safe milk)
1 cup canola oil
2 Tbsp honey/maple syrup/coconut nectar/corn syrup
3 Tbsp coconut vinegar (or other safe vinegar)

Preheat your oven to 375 degrees F. Prepare your pans--- eitehr use muffin liners for muffins or lightly oil a glass or metal baking dish. This recipe will make about 20 corn muffins or two 8inch circle pans of corn bread. Mix all dry ingredients in a bowl. Once blended, add oil, milk, and honey. Blend well. Immediately before pouring batter into pans, add vinegar and mix until just blended. Pour batter into pans, filling until about 3/4 full. Bake for 15-20 minutes or until golen brown and firm on top. Enjoy!

Its not common, but it IS possible. . . welcome to the FPIES Foundation's new website.

A little less than a year ago, I wrote this post below. After a year's worth of continued hard work and determination, I am happy to announce that The FPIES Foundation has taken things to the next level, expanding the Foundation's website and massively enhancing the tools available to families and medical professionals alike. As one of the foundaing members said, "no one needs to go through this alone" and The FPIES Foundation continues to deliver on this message, now offering even more diverse and useful tools to help families and medical professionals, from hospital to home, support the people who truly matter, the smallest of patients, our own little cutie pies. Here is that post from a year ago. Thank you for supporting us and helping us to help those in need. We will continue to deliver on our promise.

"It's not common, but it is possible"--- a statement far too many of us have heard and a statement that far too often leads to no answers and dead ends in our children's medical treatment and diagnosis. But today, this statement has a positive twist, as I am pleased to announce the launch of The FPIES Foundation.

It's not common that parents across the nation and often across the world can share the connections that we as FPIES parents share without ever meeting. But we do have these connections. Our stories are all different, but somehow all the same, and in our struggles, we have found unity, clarity, and comfort. Today, I invite you to visit The FPIES Foundation and to witness what these connections can build together. It is my belief that this Foundation will serve as a refuge for FPIES families and the doctors who support these families; a hub to find resources and support, all in the name of bettering the standards of care for the children diagnosed with FPIES. For your child and for my B-- for all of our children. It is not common, but truly, it is possible-- there is now a place that we all can call home.

Be sure to check out these features:

• An expanded toolbox
• A "Find a Doctor" feature
• An expanded FPIES Q&A
• And many many more!