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. . .