More recipes--- a double take!

Hi all! Although I will not know the true verdict until tomorrow, here are the latest and greatest recipes from B's kitchen. She was a big help today in mixing up ingredients, despite at least 1/4cup of brown sugar landing all over the floor. ;) We made caramels and gum drops-- I will post tomorrow on how they fared in the set-up process to know if the recipes are viable. They were both super easy to make. The only tool you need that you might not already have is a candy thermometer for the caramels.

Frankenrecipe: Caramel Modification from this recipe (be sure to check out the rest of her blog!)

All I did was substitute Spectrum Palm Oil Shortening instead of the Earth's Balance and Coconut Nectar in place of the Lyle's Syrup. Another alternative in place of the Lyle's Syrup is the sugar syrup recipe found in the sorbet recipe in "recipes that have passed."

Gum Drops:
3 cups of white sugar
1 cup Mango juice (or other fruit juice)
2 tbsp of agar agar (or plain gelatin)
food coloring and/or flavoring of choice

Soak the agar agar or gelatin in 1/4 cup water for about 5 minutes.

Prepare brownie pan by lining with plastic wrap or press and seal. In a medium saucepan, combine juice and sugar. Begin to bring to a boil over medium heat. Add agar agar. Boil for an additional 15 minutes or until agar agar has been completely dissolved. Pour into prepared pan, add food coloring and/or flavor (vanilla extract, etc). Allow to rest overnight in pan. (I put mine in the fridge to encourage the mixture to set up)

More tomorrow when we form the mixture into actual gum drops! Say a prayer that it works!

The TFF Alternative Cookie Swap!

Have you ever tried those "cookie swap" holiday parties? Everyone makes a few batches of their specialty cookies, brings them to the party, and all leave with an assortment?

Well, since that would surely be a land mine for most of our kids, The FPIES Foundation support group page started our own brand of "cookie swap."

http://thefpiesfoundation.hoop.la/displayForumTopic/content/256164612198048696/reply/lastReply#lastReply

 A thread for parents to post their stand-by holiday recipes safe for their FPIES and/or FA kiddos. There are food recipes and non-food recipes--- ideas for craft activities appropriate for small children and family fun events to ring in the holidays! Please check out the thread for some great recipe ideas and ideas for celebrating the holidays without the worry of food. And also--- post your own recipes or craft/family fun ideas as well! The more resources we all share, the easier the holidays will be for everyone. And really, not only do we parents advocate for our own children, but I know we all love being able to help advocate for the small ones of other parents. Let's make it a fun and safe holiday for all! Go to the link now! :)

Gearing up for the Holidays-- Recipe Challenge!

Well, how did the year go by so quickly? My goodness life is crazy!

It is that time again-- time for holidays and preparation and all of the excitement and worry that can go along with all of that. So what is a mama of a severely food allergic kiddo to do? Do you even have to ask ;)? It is time for a holiday recipe bonanza!

Please stay posted as I will be posting a new holiday recipe at least 3 times a week, maybe more. Some will be my own and others will be modifications of recipes that I have decided to tinker with. And in true form for this website, they will all be Top 8 free, FPIES common trigger free (free of rice, oats, dairy, soy, peas, legumes, green beans, sweet potato, all squash, poultry) and vegan. And they will taste good! Just a note-- I do use coconut in many recipes but it is very easy to sub for if you are coconut avoiders at your home.

Tomorrow's recipe will be for chocolate gingerbread houses, decorated with safe frosting (I will link the recipe-- it is on this site), sweet tarts and smarties. Stay tuned for the following recipes: candy bars, chocolate candy, gum drops, caramels, candy canes, cut out cookies and many many more!

Here is the recipe to kick it off:

Pear Dumplings
Ingredients:
1 cup sorghum flour
1/2 cup millet flour
1/2 cup quinoa flakes
2 Tbsp arrowroot starch
A dash of salt
2/3 cup palm oil shortening/safe butter/coconut oil
1/2 cup ice cold water

Filling:
1 cored, peeled pear (asian pear or a bartlett that you cut the top off so it is apple-shaped)
2 Tbsp brown sugar (also add cinnamon if safe. I did not use cinnamon)
1/4 cup finely chopped pineapple

Prepare the dough by first mixing all of the dry ingredients and then blending in the shortening with a pastry blender. Add the water last. Form the dough into a ball. If it is too sticky, add more millet or sorghum flour until smooth. Wrap the ball in saran wrap and refrigerate for a couple of hours.

Once the dough is ready to come out of the fridge, preheat the oven to 350 degrees F. On a floured safe piece of parchment paper, place ball of refrigerated dough. Sprinkle a bit of flour on top of the dough and then place a piece of parchment or wax paper on top to roll out dough (this way, no dough should end up on your rolling pin!). Roll into a circular shape, about 1/4inches thick. Set aside.

Core the pear (or apple if desired instead) with a corer or paring knife. You will want the outside of the pear to remain in tact and uncut. Place fruit on the center of the dough circle. Stuff the inside of the fruit with pineapple chunks and brown sugar-- top pear with any remaining brown sugar.

Make four slits in the dough from the edge to the outside of the fruit (do not cut under the fruit) at 12:00, 3:00, 6:00, and 9:00 respectively. Using the parchment paper below, gently fold up each section of dough to the top of the pear. Once all sides are folded upwards, your pear (or apple) will be encased in a little dough dumpling. Pinch the seams together to create seals around the pear and pinch tips together at the top to seal the dough. If you have extra dough, you can make little leaf shapes and adhere them to the top with a touch of wet fingers pressing the dough together. Brush the dough lightly with either a safe milk (we used coconut) or a safe butter/oil, and lift the parchment paper up to place the dumpling on a cookie sheet (using the parchment paper makes for an easy transfer and a cleaner cookie sheet!).

Bake at 350 for 20-25 minutes or until the outside of the dumpling is slightly browning and is firm. Halfway through the baking time, brush again with milk or oil.

Enjoy! I will post pics tomorrow. This was what i made for B's Thanksgiving dessert and my picky child ate the whole thing!!!!

Peace in the Darkness

In the town of Ofuna, Japan, there is an impressive statue of the Kannon, the Buddhist goddess of peace and mercy. This site also houses the eternal flame from the Nagasaki bombs and several other monuments to peace. The Kannon in Ofuna is also meant to be a site for people from foreign lands to visit when they are feeling homesick, a place for people feeling like strangers in a strange land, wishing for a normalcy that they once knew.

In the midst of the confusion, the dark nights, and the constant battles with foods and helping our children to have pain-free days, we still have moments of clarity and beauty every single day. We have chances to see the world through their eyes, to see the beauty and to not always have to realize the weight of a situation, no matter how daunting or overwhelming it may be. It amazes me that always in the midst of some of the most frustrating days, the times when I am just done with FPIES and angry at what it does to my child and my friends' children, my daughter, my beautiful B brings me back to peace.

Today, I went to the hospital. Not for a reaction, not for an allergy test, not for a check-up. Today I went for an ultrasound and got to see our new baby for the first time. (Yes, I am pregnant! My lack of posting is now hopefully making more sense to all of you! haha) We have fears of food allergies (mainly FPIES) and fears of my heart condition complicating the pregnancy, but all of that washed away when N and I could show B, "Look! That's our baby! You are that baby's big sister!" She saw the tiny hands and the tiny heart beat and with excitement said, "That baby is wigglin' around!!!" Any and all anxiety we had been feeling just left and we all enjoyed the moment together, meeting our new little family member. There will be times to worry, times to prepare. But there will be times for peace. There really must always be time for peace.

When I first saw the Kannon, B and I were riding the train and had become turned around. Not badly lost, but in need of direction. I remember looking out the train window and whispering "Who is THAT?" as I saw a huge alabaster bust rising out of the densely wooded mountain. When we finally went to visit her, it was the most peaceful place and I understood the Kannon's significance. As I try to be more and more in the moment with B, I realize the place that peace really does need to have in my house (and I am sure in all of our houses!) We have been turned around, we have lost our way on a lot of days because of FPIES and all that factors in to that, but I now aim to focus on being in B's moment, finding myself and finding my family in times of peace. And I am so happy to now have two babies, one more of a big girl and one yet to meet the world, to remind me of this and the so many other moments of beauty that will find us, FPIES or not.

B's Chewy Coconut Granola Bars

Every now and then I assemble a bunch of ingredients in front of my now toddler daughter and let her add what she chooses at will (I determine the amounts of each ingredient though!) to the mixing bowl. It makes for some long ingredient lists but it also makes for a very happy toddler. I created the base for this recipe (the quinoa flakes and sunflower seeds) and allowed her to use "modified discretion" for the rest. Enjoy!

B's Chewy Coconut Granola Bars
2 cups quinoa flakes, toasted (you can sub. millet flakes, rolled oats or amaranth flakes)
1 cup raw sunflower seeds (no husks), ground to a powder and roasted with the quinoa flakes
1 banana, mashed (or 1/4 cup finely diced apples, strawberries, or pineapple)
1/4 c pear sauce (or other fruit puree, no added water)
1/2 c. honey
2 Tbsp brown sugar
1 tsp. vanilla
1/4 cup Enjoy Life Chocolate Chips**
1/2 cup finely shredded coconut plus 2 Tbsp

Preheat the oven to 325 degrees F. Line a cookie sheet with parchment paper (or silicone liner). Measure out 1 cup of shelled sunflower seeds and pulverize in the blender or food processor until a fine powder results. Pour the sunflower seed powder and the 2 cups of quinoa flakes onto your cookie sheet, blending ingredients with a fork. Toast in the oven for 10 minutes. Once done, remove mixture and pour into a medium bowl. Increase oven heat to 350 degrees F. Save your cookie sheet and parchment and set aside!

In the bowl containing the toasted mixture, add mashed banana (or diced apples/strawberries/pineapples), pear sauce and honey; blend well. Add brown sugar, vanilla, 1/2 cup shredded coconut and chocolate chips. Mix until all ingredients are well blended. Press the mixture onto the lined cookie sheet and flatten until mixture is evenly about 1/4-1/2 inches thick. Sprinkle remaining 2 Tbsp of coconut over the top of the mixture. Bake at 350 for 15-20 minutes or until the edges turn crispy and golden brown. Allow bars to cool and then cut into desired shapes and sizes. Freeze, store in sealed container, or eat! Enjoy--- we sure did!

** Instead of using 1/4 cup of Enjoy Life chips, you could use 1/4 cup safe baking cocoa instead.

An Incredible Update from The FPIES Foundation!

As some or all of you may already know, I am very proud to be serving on the board of directors for The FPIES Foundation, a non-profit organization aiming to educate, empower and advocate for families of children diagnosed with FPIES. I am especially excited to announce to all of you that as of November 3rd, we have now revealed the amazing team of health care professionals helping us to accomplish our goals-- our Medical Advisory Board.  This is an incredible group of individuals, truly committed to helping improve the futures for our children, our families, and the medical professionals seeking to help these little ones.

Halloween Crafts!

Hi all! As some of you may already know, I have a play doh recipe in the recipe file (lower left hand column-- and it is alphabetized!) that you can use for making homemade play doh with many different alternative flours (millet, sorghum, corn, etc). You can use this recipe for the craft project I am going to describe below! Or you can use this one for baking soda and starch playdoh--- it calls for corn starch, but you can use tapioca starch, potato starch or even arrowroot starch. You may need to play around with your burner temp depending on the starch you choose, particularly with arrowroot (very temperature finicky). Do not eat these. Even if the ingredients are safe, they will taste awful. You have been warned.

Festive Fall Trees

1. Take a nature walk and find a nice branch that you can either put in a vase or in a flower pot (hold in place with rocks, etc) and has many little off shoot branches-- you need them for hanging your creations!

2. Assemble cookie cutters with a fall or Halloween theme and a few narrow straws.

3. Make your playdoh using your recipe of choice. If you plan on painting your creations, you do not need to add food coloring. If you do not want to paint your creations, make some fun Halloween/fall colors for your playdoh. For extra fun, if not baking the playdoh shapes, you can mix GLITTER into the playdoh. Delightful!

4. Using rolling pins, roll out the prepared playdoh about 1/4 inch thick (or if you are like our house, have your two year old roll it out to her own discretion since she evidently knows best. Thicker playdoh will take longer to dry however.)

5. Cut out various Halloween/fall shapes with your cookie cutters and assemble completed shapes on a clean baking sheet, covered or uncovered (using parchment paper, etc). Using a straw, make small holes in each shape so that ribbon or yarn can be threaded through once dry.

6. Once finished, if using the playdoh recipe in Baby B's recipe file, you can actually bake it at about 325 F until shapes are slightly puffy and firm. Like yucky tasting, salty cookies. If using the recipe for the link above, depending on thickness, playdoh may need to be left out for 1-2 days until completely hard.

7. Once shapes are hard, you can decorate if desired! Use acrylic or tempera paints to paint the shapes-- a sponge applicator might be helpful for small or unsteady (i.e. mama had too much caffeine. . .) hands. You can also glue on buttons, ribbon, etc. Whatever works and whatever sticks! Allow shapes to dry.

8. Once your shapes are decorated to your liking and all decor has dried, cut 4-6inch pieces of festive ribbon (I like the thinnest grosgrain ribbon--- 50cents to a dollar for a spool at Joanns!). Thread each ribbon piece through hole in each shape and knot the ends together.

9. Hang your shapes on your branch (remember our nature walk?)

10. Enjoy your happy Halloween/happy harvest decoration!!

***** For extra Thanksgiving fun. . . . you can make all Thanksgiving shapes-- acorns, leaves, pumpkins, etc. Just be sure shapes are wide enough to be able to write on. Have each child choose a shape and write his/her name on it. Then have the child (adults can do this too!) tell you one thing they are thankful for this Thanksgiving (you can do a little intro with describing in age appropriate ways what it means to be thankful and giving examples of how to show thankfulness). Have the child write or have an adult or older child write for the child what each of them is thankful for, one item per shape. On  Thanksgiving, before or after dinner, the whole family can go around and read the shapes, telling what each is thankful for this Thanksgiving.

Enjoy!

You Might Be an FPIES Short Order Cook IF. . .

1. You constantly scour cookbooks and internet sites for recipes requiring 5 ingredients or less

2. You remain suspicious of recipes/products claiming "allergy friendly!" due to your child's allergens generally topping the so-called hypoallergenic list

3. You become so accustomed to eggless gluten free cooking, that when making a "regular" cake you are baffled as to why your cake rose so much

4. You develop an affinity for apple or banana tasting baked goods

5. You have separate baking supplies for all of your allergy-free baking endeavors, to the point that your food allergic child will one day have a complete kitchen set when he/she moves out of the house

6. You are forced to purchase a chest freezer for additional long-term food storage

7. You regularly have cases of specialty foods show up on your doorstep so much so that your neighbors wonder whether or not you are starting a health food store on your front porch

8. The majority of your baking ingredients are foods that most of society is blissfully ignorant to the existence of

9. You regularly taste the batter of your baked goods before baking--- no raw eggs so what's the harm, right?

10. You fantasize about the day when your family will be able to enjoy the same meal, all together, and that meal will not consist of only enjoy life chocolate chips and ice water.

Add your own! This list could go on forever!

Flash Freezing--- So Pleasing!!

Happy weekend, everyone, and happy fall! Here in MA we are starting to see trees changing color already as other signs of fall creep in. This time of year is great for a lot of reasons but the one I am currently enjoying most is cheap produce and the ability to flash freeze these seasonal products for tasty treats all winter long.

Today I was able to get some great blackberries, raspberries and strawberries all on sale, and with very few "duds" in each package. In response to some awesome mamas asking me recently how to flash freeze, I decided to make a little photo tutorial of my afternoon in the kitchen with B's beloved berries.

Flash Freezing:
1. Clean and inspect all of the produce you are planning on using. Cut out bad spots and remove all moldy produce.

2. Once produce has been inspected and cleaned, cut pieces as you would like to freeze them (broccoli into small florets, strawberries into fourths, etc)

3. Spread pieces onto large cutting board covered with paper towels to dry. Set aside and assemble needed equipment for freezing.

4. Assemble cookie sheets and your choice of cookie sheet liner (aluminum foil, plastic wrap, press and seal, wax paper, parchment paper, etc.); be sure that there is a clear spot in the freezer to lay your cookie trays flat. Freezer tetris time!

5. Line cookie sheets with preferred liner(s). Today, I used foil (shiny side up) on one, plastic wrap on another, and press and seal on the third (adhesive side facing down on the cookie sheet).

6. Gently pat produce dry with paper towels (or clean kitchen towels-- just remember that some produce may stain your towels!) and begin assembling produce pieces on cookie sheets.

The raspberries are on generic plastic wrap-lined cookie sheets

7. Produce pieces should not touch one another if at all possible and try your best to keep the smallest area of the produce piece on the surface as possible (in case it sticks, you have less surface area to try and detach it once frozen.)

The blackberries are on aluminum foil-lined cookie sheets

8. Once all pieces are distributed onto the cookie sheets, slide into the freezer so that they remain flat. Check on the pieces after the first hour or so, but I generally set my timer for four hours and that tends to be enough for small pieces of produce (berry size). They will feel like little rocks but not be "frostbitten," so to speak. Once frozen, you really shouldn't get much, if any, juice on your hands from briefly touching the produce.

9. Label freezer bags with the type of produce and the date you are freezing them (permanent markers are great for this!)

10. Fill appropriate bags with corresponding produce. Back to the freezer they go! Try not to eat the produce until you can no longer get it in the store (or at least until it is no longer at a decent price in the store!)

More pictures to come tonight once they are frozen and bagged up!

Of course, fruits like apples, pears or bananas may not fare as well sliced and flash frozen color-wise. You can sprinkle lemon juice on them to better maintain the fruit's color, if lemons are safe for your LO. I personally prefer to make pear sauce (since apples are not safe) and freeze it in the ice cube trays like how you would prepare homemade baby food (also see here). I do the same with beet sauce (boiled and pureed beets-- same consistency as apple sauce. B loves it!)

Enjoy the harvest time and stock up for winter! Your sanity will thank you later!

Sesame and Support

Hi all! Time for another new recipe and some new information in the FPIES community (always good things right?!) First for the information, since it is short and sweet (not unlike the recipe to follow. . .)

The FPIES Foundation (of which I am proud to say that I am on its Board of Directors) has introduced a phenomenal new support forum. I really feel like it has combined the best qualities of the various FPIES forums out there and is really designed with FPIES parents in mind (i.e. you can navigate it quickly and without agonizing over where to find something, all while fielding hurtling toys from your small child who may or may not be reacting to a new food. . .). There are separate categories and delineated topics in each, you can add tags to your post for easier searching, and the relevant topics are all there. Plus, the parents are on there too-- it is definitely not a ghost town! Go ahead-- check it out! Go to The FPIES Foundation, scroll down and click on the  green words "support forum" on the lower right hand corner. I'll see you there-- and yes, I will post updates for new recipes on this forum!!

And for the recipe. . ..

We are half-heartedly trialing sesame at the time, though we took several days off last week due to some noticeable but not awful symptoms. Things have calmed down and we are ready to step up to the plate again. So for tomorrow, we have sesame milk on the roster!

NOTE: I told B that the cast of Sesame Street eats sesame and I love 80s movies. . .this is where our title comes from. ENJOY!

St. Elmo's Milk
4 cups HOT water
1 cup sesame seeds, raw or roasted
3 Tbsp honey or coconut nectar (or other sweetener of choice)
3 Tbsp vanilla extract (or other extract of choice)

In a blender, add sesame seeds, hot water, honey and vanilla. Cover with lid and mix at your blender's highest speed for about 2-4 minutes. Mixture should be foamy and frothy. Run through your favorite nut/seed milk bag or through cheesecloth to remove "pulp" if desired (if you don't strain it, the milk has the consistency of pulpy orange juice). I found this great link to nylon bags that are made with super fine hemp mesh-- called Sprout Bags. These look wonderful for this recipe! Refrigerate once strained. This should keep for about a week in the fridge.

As for soaking the seeds prior to making milk, I will be trying that tomorrow and comparing the two. I will post the results!

If you are using this recipe for making sorbet/ice cream or for baking with the sesame milk, it probably won't be worth your time to strain. But if you are making it for drinking, straining might be helpful, depending on your small one's palate.

Keep posted for more sesame recipes, including one for chocolate chewy sesame granola bars (made them last week! B loved them!) And see you on the forum!!!

Breaking Bread (without it falling apart!)

Happy Friday, everyone! I am very happy to announce that today, B had a SANDWICH, and yes, of course I took pictures! Not only was this a huge milestone for B, but also a happy day for me on the blog. I am so happy to be able to share a recipe for a bread that is yeast free, egg free, free of commercial egg substitutes-- something so sought after by many of us. I will be working on more versions of this recipe so more people can share it, but I invite you mamas to experiment yourself-- try out different flours, different combos of ingredients. I already have made notes on how I will make the next version of this recipe. . .

B's Big Girl Sandwich Bread

Ingredients:

1c. Sorghum flour

1c. Quinoa flakes

1/4 c. Millet flour

3 Tbsp. Arrowroot starch (or other safe starch)

1 Tbsp Baking powder (use Hain brand for corn free or a homemade version)

1 tsp Baking soda

1/4 c. Canola oil

1/4 c. Honey (or coconut nectar)

1 Tbsp. Vinegar (I used coconut, but there are other vinegars out there!)

1 c. milk (I used coconut but any milk would work here)

Preheat your oven to 325 degrees F; grease and lightly flour a medium size loaf pan. Set aside. In a large bowl, mix all dry ingredients together well with pastry blender. Add in vinegar and allow to rest for 1-2 minutes; blend well with pastry blender. Add in oil and honey-- blend well with pastry blender (I really love my pastry blender!). Once all ingredients are well blended, add in the cup of milk and mix in just completely-- batter may be lumpy and that is OK!!! Pour mixture into prepared pan, cover with a linen towel, and allow to rest on the warm stove top (or another warm surface) for 20-30 minutes. 

After resting period, remove linen towel and bake in preheated over for 20 minutes. Remove from oven and lightly brush the crust with milk (I used coconut). return the pan to the oven and continue to bake for an additional 15-20 minutes, or until crust is firm and nicely browned. Remove pan from oven and allow to cool in the pan for about 10 minutes. After cooling, turn out the loaf onto a cutting board and allow to completely cool. DO NOT slice bread until completely cool--- bread does not slice as well when warm. I refrigerated ours for an hour or so and then sliced it and it turned out nicely. Store in a covered dish or ziploc bag in the refrigerator.

NOTE: this makes a small loaf height-wise, so for an "adult size" loaf, double everything.

For B's sandwich, I let her chose her "filling"--- strawberry jam from For the Love of June (This jam is great because it is only strawberries and sugar and their cross contamination practices are very strict.), coconut manna from Nutiva, sunflower seed butter from Once Again, and honey. She ended up choosing strawberry jam with a layer of coconut manna and a dash of honey. She ate every last gooey bite. She was so proud to have a sandwich, "just like daddy!"

Memory Lane-- Has it been 2years Already?!

I was talking with my husband the other night and realized that this week will be the second anniversary of B's first FPIES reaction to solid food-- rice cereal. In some ways, it is so daunting to look back and think that yes, it has been two years, and yes, it has been two years and we are still stuck in THIS?! But then looking at it from a different perspective, we are in so much of a better place now than we were then, in that we understand more of this beast everyday. We are still nowhere close to the zone where she stops reacting to new things but I am hoping that we reach that point in another year or so. I mean, we will eventually run out of foods to trail right? Haha!

One thing that some of you may not know about me is that I have a heart condition that is, currently, very well under control. When I was pregnant with B, they discovered the condition after several ER visits because I couldn't stop my tachycardia (before I was preggers, I knew different interventions that would stop it but nothing worked when I was pregnant). Once the docs recorded my heart rate during these episodes and recorded how long the episodes went on (I had some very attractive heart monitors to wear, one around my neck-- being extremely pregnant at the time, I looked like Flava Flav if he had swallowed a basketball), they called me when I was 39 weeks and told me that I couldn't deliver B at the base hospital because they were afraid that due to our lack of specialists, they would lose me, B, or both of us.

When I went into labor, my water leaked for days before they actually did an ultrasound and believed me that I was losing amniotic fluid. The ride to the hospital was ridiculous-- it was an hour away and there were so many medical people in that ambulance that N was not allowed to ride with me. He drove behind the ambulance in the car and I remember just watching him from behind the oxygen mask. The doctors had both of us terrified-- we didn't understand why they had disregarded this throughout most of my pregnancy and now they were petrified of me and my girl not making it. The bad news is my over 24 hrs of labor still led to a c-section (I was SO bummed!) but the good news is, my heart was fine and so was B. Apparently, when your heart reaches a certain speed and remains there or goes higher when you are pregnant, the risk is high (according to those docs) for your body to cut off blood flow to the placenta and the baby, hence their concern for B. After she was born, the pressure was on for me to be sent back to the states for surgery, but as with all things in that particular bureaucracy (hehe), it took months for the surgery to be scheduled, as it had to be done stateside.

With my husband gone out to sea for most of B's infancy, with us living overseas apart from any family, with the docs telling me that my heart could essentially "crap out" on me at any moment, and with her screaming, lack of sleep and tons of unexplained symptoms, I still stayed sane, but I was scared. And as it became more and more evident that there was a problem brewing with B's system, I became more scared--- how could this baby make it without me? I was her lifeline and following her severe FPIES reactions with solid foods (4x before diagnosis) and minor reactions to so many other foods, that fact was even more apparent. At 8 months, we pulled all foods, not knowing what to do to make food safe for her.

From that first reaction until after my surgery, I pumped diligently each night after her bedtime nursing. I wanted to have a stash for her, just in case I couldn't be there. Something to get her through the first days and nights until N would have been able to convince the docs that we had to order special formula from the states. I wrote letters to her and N and hid them around the house, and I pushed myself to finish her baptism gown before the surgery. I remember fighting with the medical staff who initially refused to let B travel with me for my surgery (I had to go to CA) and finally had the ombudsman contact someone very high up in the command  who permitted her to fly with me. I remember fighting tears on the phone, telling them that they didn't understand, she had NO FOOD, I was her FOOD. . . and no one believed me. Finally, they released N from the ship (they were off floating around somewhere by the end of September that year) to come home and travel with us.

My surgery was supposed to be the day after arriving in the states, so we traveled with a ton of frozen breastmilk (it was fun going through security and customs! haha) all of which I ended up losing because the flight attendants wouldn't allow us to store it in their fridge (even though it was all sealed up in its own little container) and we had to rely on bags of ice for over 24 hours of traveling. When we got there, the surgery date was rescheduled for two weeks later. I pumped like a fiend as much as I could while in Cali, but I never got much from pumping and since B nursed at least 12 times or more a day at that point, well, there wasn't much time to pump! But we also started our Kix trial well we were there, again, out of need, out of necessity. And we played around with cooking bananas, which seemed to help her improve her tolerance of them. Once the surgery date came, I was ready but again, still so scared. They all had me believing that I would never see B or N again and I was just so scared for what might happen with her. .

Happily (As I am sure you have figured out by now, since I am not writing this from the afterlife), the surgery was successful and it only took a few months afterwards for the episodes to die down (something about the procedure creating a hole that needed time to heal). I have been told the abnormality can grown back, but haven't had anymore severe symptoms as I did when I was pregnant with B. I am so thankful for everyday I have with my B and with N.

So my long winded story has a point-- fear. We are subjected to it on many levels and often from many sources. Much of the FPIES beast can cause a great amount of fear, fear for the unknown, fear for how our child could be cared for if something were to happen to one of us as the primary caregivers. I think the greatest thing we can do for ourselves as parents in this FPIES community and for our children, is to not contribute to the fear. There is enough of FPIES that we cannot control-- we can control our attitudes, we can control our approach to others in our community, and we can control our ability and willingness to reach out. Without reaching out to others and establishing connections, without refusing to engage in drama that this fear can create, we cannot support our community to the best of our abilities and we cannot garner the support we need from the global community to help our children as well.

Because of these experiences that I describe above and others that have truly defined my life, I have always been driven to reach out in my professional and personal life, to support those who aren't being adequately supported, to find those that others have overlooked and forgotten. And in our FPIES community, the same standards apply--- it is my belief that we need to all strive to leave NO ONE behind. So I ask of everyone out there, remember another family today, or another mama that might be struggling, or another child that is stuck in a hospital admission. Remember those who might be swept under the rug or forgotten by someone else. Let's eradicate all of the fear that we are able and let's create some connections. Just as we are all lifelines for our children, let us all be lifelines for one another.

Everyone Needs a Toolbox!

Watching B "fix" the TV today with her toy screwdriver (we couldn't find the remote and my small determined person was sure she could make it work!!!), reminded me to tell all of you to visit The FPIES Foundation and its amazing Toolbox. There, you will find some tools to get you started on food journaling, drafting an emergency plan (never fun, but certainly necessary), talking with your child's doctor about FPIES, and more!

Be sure to check out the other resources that the FPIES Foundation site has to offer, such as the support forum (link on the main page) and the list of medical journal articles about FPIES.

We all know, as parents of kiddos with food allergies, that being prepared is really the best way to navigate this often unpredictable "beast," as it were. So gather up some tools, perfect the old ones, or email The FPIES Foundation with suggestions for more tools to add to the toolbox!

"It's Not Common, But it is Possible. . . "

"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.


Official Press Release!

www.thefpiesfoundation.org

PRESS RELEASE

FOR IMMEDIATE RELEASE: 5 A.M. EST, August 31, 2011

CONTACT:

BRENDA INCARNATO

THE FPIES FOUNDATION

EMAIL: B.INCARNATO@THEFPIESFOUNDATION.ORG

NON PROFIT TO SUPPORT PEDIATRIC PATIENTS WITH RARE DISEASE

KENMORE, WA, AUGUST 31, 2011: The FPIES Foundation, headquartered in Kenmore, WA, is announcing the launch of their non-profit organization and interactive web site on Wednesday, August 31, 2011.

The organization's founders identified a dire need for tangible support resources and formed to help overcome the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.

Food Protein Induced Enterocolitis Syndrome is a rare, non-IgE mediated food allergy of the gut afflicting infants and children. A delayed reaction occurs (~2hrs or more) after ingesting the culprit food. Classic symptoms include profound vomiting, diarrhea, and dehydration. Symptoms can quickly lead to lethargy and in severe cases, septic-like shock. Little is known about this rare disease and currently no known causes, cures, standardized tests or treatment plans exist for FPIES patients. The FPIES Foundation will offer families interactive resources such as an online support forum as well as the opportunity to participate in an FPIES Food Survey project. A library of medical literature links and patient education tools will be provided for doctors.

The FPIES Foundation is comprised of eight board members nationwide, all of whom currently have children with FPIES. The foundation's goal is to collaborate with families, medical professionals, and partnering organizations across the globe to improve the lives of FPIES children, present and future. "Our foundation is a symbol of empowerment for all, a place where you can feel a sense of community and nurturance.“ Brenda Incarnato, Founding member and Chair

As quickly as it began, so it ends

Almost two and a half years ago, my beautiful girl was born and I immediately began nursing her. She instantly was a nursing pro and I was so proud--- great latch, the whole nine. But of course there was the screaming, the reflux, only nursing in certain positions and nursing for LONG periods of time. . . All in all, it was her comfort and to be honest, it was my comfort too. With my husband out to sea, living overseas, and with a newborn that screamed day and night, it was comforting to have SOMETHING that would quiet her for a little bit. My initial attempts at elimination diets did not work (I know now that I wasn't likely eliminating for long enough periods of time) and the doctors and lactation specialists kept identifying me as the problem. Too much foremilk, vegetarians can't have enough hindmilk (I set my milk out on the counter to watch it separate to test this theory. Let's just say my daughter has been ingesting cream from day one!), nursing too much, overreactive first time mama, etc etc ad nauseum. At five weeks old, I finally was signed up to have the visiting nurse come to our apartment to help with B. She left before the session was over, looking frightened and said there was nothing she could do for us. I never got any calls back.

Fast forward to the first FPIES reaction. My amazing friend who helped me through much of the breastfeeding process was the first to tell me that my plan of weaning by 12 months was not a realistic one. She told me that I needed to do whatever I could to maintain the nursing relationship, to encourage her to nurse when some mamas were trying to encourage their babies to wean to formula. So as months went on and I tried more adjustments and B failed more foods, it became very evident the role breastfeeding played in our lives. For both of us, it was a lifeline. It did feel strange to be nursing 8-10 times a day at 12 months and then at 15 months. We certainly got some looks, especially after moving back to the states. But again, this was what B needed and as all of you know, being a parent takes you to a different version of yourself, a version that does not give a flying fig what someone else's judgement is on your care of your child, if you know in your heart that what you are doing is best and is necessary.

We have been through a lot together. I am quite certain that half of the world has seen at least one or likely both of my breasts. (Coverups were just a recipe for disaster with this kiddo!) I am not certain that I have not been photographed with cell phones while nursing in public. I have nursed on planes, trains, beaches, sidewalks, at restaurants, temples, shrines, parks, grocery stores, and in front of random buildings. I have mastered the art of holding an infant parallel to the floor while nursing and walking with a bounce in my step so that she will settle down. We have an affirmed elimination diet in place that took many many months to hammer out and I know that if I stray from it, a reaction hits.

But tomorrow night will be the last night, the end to this complex, beautiful and often harrowing relationship.

I am scared. Maybe terrified on some levels. We just found out that the Splash is likely the cause of her random vomiting and her diet is far from complete, so going without a formula is out of the question. But as I watched her nurse tonight, I knew it was time. We will figure this out, we will build a supplement if we need to. We are lucky that there aren't a ton of holes in her diet and it wouldn't have to be a complete formula that we would need to build-- just like a customized version of her own pediasure or something similar.

I won't talk about formula for now. I won't talk about plans for the future, or what we lack or what we don't lack for B. Tonight I just want to quietly say goodbye to this facet of B's babyhood, B's growing up. For all of you mamas out there feeling the pressure from others to stop nursing, or that there is "something wrong" with your milk, or feeling your confidence eroded by what allergies do to our children and the guessing games we have to play, please know this. Everyone has different situations, circumstances and the like, but I will always look back on the decision to nurse and the decision to nurse for as long as we did, as the best decision I have ever made for my daughter. There ARE resources out there to help get most families through to a successful nursing relationship, for as long as that relationship needs to be in place. We have been thrown for quite a few loops to say the least, but the most basic, wonderful thing I could provide for her was what I was fortunate enough to be able to do. And I "grew" one incredible, amazing little girl.

Recipe File!

To all of Baby B's friends and family--- the table of contents for recipes is HERE!!! So sorry that it has taken me a year and a half to do it, but if you look at the left side of the home page and scroll down, you will see a list of recipes. Just click on the link to take you to the post for that recipe! Enjoy! Let me know if any of the links fail!! I hope this makes cooking a little easier for all!

Its My Party, I'll Eat Beets If I Want To. . . Chocolate Cake and Sunflower Seed Butter Frosting

Hello all! Well, in honor of my happy birthday (as B calls it), I had to share the cake I made for B and I. I must say, my husband did his research and found a beautiful ice cream cake for him and I that is safe for my elim diet, though not safe for B. Good job, N! It was delish!!!

As for my homemade creation. . . . I am still nursing (at 29 months as of today! They need a new classification for those who nurse this long-- steel nipples perhaps? Haha) and since December, I have had to eliminate everything that B has failed since that time because she has started reacting to ALL new fails via my milk. Boo! So I have recently lost lemon, cinnamon and all nuts and peanuts in the last few months, in addition to the other foods I am eliminating. But in bdays past, I always loved PB/chocolate cakes or lemon cakes-- both are big no-nos this year. So I thought I would make something safe for me but also safe for B! Here is what we got. . .

Note the finger prints in the frosting to the left. I had these sitting on the side board while I cooked dinner and B kept walking by and saying, "Mmmmm, a little taste of frosting. . ." When I checked on the cupcakes, I had to laugh-- she was stealing bites of frosting off the cupcakes! She has NEVER done this before! I call this success!!!

Ok-- the basics. This recipe is free of the big 8 allergens. It is free of all FPIES common triggers, can be corn free (if you use the HAIN baking powder and non-iodized salt), it is vegan, and it gives you some fruits AND veggies in your dessert serving!!! It works best as cupcakes but does hold up well enough to be made into a  big cake. It is super moist but maintains its shape beautifully. It does take awhile to bake do to the low temp. Here is the recipe!!!

Happy Birthday Mama Safe Cake
1/2 cup Sorghum flour
1/2 cup Quinoa flakes
2 Tbsp Millet flour
3 Tbsp arrowroot starch (or other starch)
1/2 cup baking cocoa (I used Hershey's)
1 Tbsp baking powder
1 tsp baking soda
1 tsp salt

1 cup pureed beets-- add water as pureeing until the consistency of apple sauce
1 cup pureed pears-- do not add liquid. Finely diced fruit is fine as well-- I would suggest pineapple, banana or apples
1/2 cup coconut or hemp milk
1/4 cup melted spectrum palm oil shortening (or allergy safe "butter" sub--- no oil here as it must coagulate)
1 cup plus 2 Tbsp sugar or sugar sub
1 tsp vanilla (opt)

Preheat your oven to 325 F and prepare your cake pan-- grease and flour! If using cupcakes, simply use liners or silicone cupcake molds.

Puree beets to desired consistency and pour 1 cup (the puree should measure one cup, not the cooked, chopped beets) into a medium bowl. Fold in 1 cup of pear puree. Once well blended, add melted shortening, coconut milk, and vanilla, blending well. Time to throw in the sugar!!! Blend well as you gradually add in the sugar. Set bowl aside.

In a separate large bowl, mix flours, starch, cocoa, baking powder, baking soda, and salt. You can play around with the types of flours used and would probably be ok using just one kind of flour and one kind of starch. I personally like this combo if you have these available to you! Remember, if making the corn free version of this recipe, use HAIN baking powder or a homemade version. Once all ingredients are well-blended, gradually fold in the wet ingredient mixture, just until well blended. Lumps are good!!!

Pour mixture into prepared pans. Bake in a 325 F oven for 30-40 minutes (I set my timer for 20 minutes, then 10minutes, then 10 minutes, and so on, until everything set up) or until the top of the cake is firm and you can push on the center without it puckering in.

Remove from oven and allow cake to cool in pan on stove top for 10 minutes or so. Remove cake from pan and allow to fully cool on intended serving plate. Once cool, frost!!!! (see below!!)

Sunflower Seed Butter Frosting
2-4 cups powdered sugar (I start with 2 and then add more as needed)***
3 Tbsp Spectrum Palm Shortening (or coconut manna or shortening/butter of choice)
2-4 Tbsp coconut milk or other milk (Again, I start small and add as needed)
1-2 Tbsp sunflower seed butter (you could also use homemade hemp seed butter, found at the bottom of the page here (last recipe).
1 tsp vanilla

Cream the shortening and sugar together. Slowly add in vanilla and then milk while blending. Once smooth, add in the sunflower seed butter (be sure to stir your sunflower seed butter well-- for this recipe, you do not want your sunflower seed butter to be too oily) and blend well. Add additional powdered sugar if needed until desired consistency is met. Attempt to restrain self from eating before frosting the cake, although really, making a second batch wouldn't be such an awful thing. Makes approximately 1 cup of frosting. I am currently freezing the leftovers. I will let you know how that goes-- how I see it is we either end up with frosting for another day or a super delicious freezer fudge. Either way, we win!

*** For corn free, there are powdered sugars that are potato based and some are tapioca based. To make your own, check this out using your starch of choice rather than corn starch.

So technically, this recipe could be done with 6-7 safe foods, depending on the variety you wanted to have with the flours.

Ok, enjoy! I hold no responsibility for those of you unable to stop eating this frosting or frosting/cake combo. I froze mine as soon as possible to avoid the potential for consuming large amounts of this treat!

There Might Be Bread

And now we pray. . .

Seriously though, I am still in the process of bread making (finding yeast free and egg free ways to make bread can prove tricky!) but it is coming along. The next recipe I post with be a bread that is: Top 8 free, rice free, yeast free, vegan, etc etc. Still working on a corn free version but I am fairly confident there will be some flexibility in substitution. This bread is intended to be a sandwich bread, not a sweet bread, but it is also fitting in the category of "quick bread" which is awesome! SO stay tuned! It will be out in less than two weeks!!!

The Thank Yous

So sorry for the lack of new recipes! Our kitchen is STILL torn to pieces (but we are making progress!) and. . .a little foreshadowing here. . .you may all be seeing our kitchen in all of its glory before too long with moving pictures. . .

So in lieu of a recipe tonight, I just wanted to say thank you. Thank you for all of our supporters who have been right beside us in the kitchen all these months! Thank you for all of you for giving us inspiration and strength to try new things, new ways of doing old things and new avenues for doing them.

Thank you most of all for inspiring each other and for reaching out to all parents, new and "veteran." I look on the FPIES boards and groups and I see so many of you connecting and sharing. I love that when a new parent calls out for help, all of you are THERE for them because we have all been in that place, that scary, dark place, waiting for someone to respond to us, to help us find answers when doctors tell us there are none.  I feel so honored to be a part of this group, this COMMUNITY, and I am so touched that so many of you, fighting so hard for your own children, will think nothing of reaching out and offering a hand to help fight for someone else's baby, too. We might not be able to change the diagnosis, but our community is giving a face, a name and an incredible support network to our children and families. Thank you for all that you have done and for all that you continue to do. This community never ceases to amaze me.

Knitting and New Moms (this one's for you!)

It may shock you (or if you know me well, it might not!) that I spent most of my preteen, teen and young adult years on the stage. It was home to me! I loved taking on a new character, I loved creating, I loved sharing a new world with an audience.

During my Sophmore year of college, I played Agnes in Dancing at Lughnasa. My character knitted, like, ridiculously well. I, at 19, did not. So with the other "sisters," the knitting lessons began. Our wonderful instructor, Debbie, told us that although it might be hard to learn at first (we had to learn how to knit cuffs for gloves using the old tiny needles), it would become second nature to us and we might even find ourselves reaching for the knitting during finals to relax. Well. . . I loved Debbie, but I thought she was a tad crazy for saying this! But I took my knitting back to the dorm room and set out to become a more believable Agnes. It did not take long for the knitting needles to sail across the room, narrowly missing my good friend's left eye (oops). Every night, I made myself knit for a minimum of 2 hours. I cursed, I threw needles, I pouted (hehe), but every night, there I sat. In rehearsals, I got better at knitting while playing my role (talk about multitasking!!) but every night, I would inevitably drop stitches, tangle my needles, and eventually have to rip it all out and start over. Opening night finally came and at the end of the show, I looked down at my knitting basket in surprise. I had made my first flawless cuff, and I hadn't even been paying attention! It just happened, it just worked.

When I started cooking for B, with our short list of ingredients (masa, arrowroot, pears, and bananas), I cursed, I threw cookbooks (before I exiled them to the living room altogether), I hurled pans at the wall. I scraped lots of mushy looking science experiments from pans, soaked a ton of dishes and went through a lot of dish soap. But in a few weeks, recipes started to become edible. And in a month or two, recipes became perfected. In another few months, I expanded recipes, knew all of the instructions by heart, and knew how to successfully troubleshoot (most of the time!).

Now a year and a half later, our ingredient list has expanded, but more significantly so has our repertoire. The occasional pan does become airborne here or there, but the kitchen has become a happier place. I still wish B didn't have FPIES, I still yearn for easier ingredients to manipulate into recipes, and I certainly still crave the ability to cook only ONE meal for all family members, but all in all, it has become our new norm. And just as I did eventually find COMFORT in knitting (Debbie was right!), I now find comfort and peace in baking in our FPIES test kitchen. I love the joy of helping other parents figure out how to make their own FPIES kitchen "just work"!

I have noticed many new moms popping up in the Facebook and Baby Center groups. In a way, this makes me sad because this means another set of babies is having to go through what B experiences, but in a way, I am glad because it means there is more awareness and parents are finding each other. So to all of you new mamas (and daddies!) as you start your journey in FPIES, I know it feels daunting. I know it feels overwhelming and to be honest, brutally unfair at times. There are parts of this journey that don't get easier over time. But you will find your new norm, you will find your new day-to-day living, and you will find your own peace and comfort. It might be in a place you would never expect. Most importantly, we have to continue to find one another. When we do reach out, when we do connect, then it does get easier. Please open yourselves to connecting with others and open yourselves to finding your comfort. The door to Baby B and my kitchen is always open.

Today She Asked for a Snack

Last Friday. . .

My B stopped me in my tracks today, asking for a snack. "I'm hungry, mama." This may not seem all that mind-blowing to some, but you have to understand, B has not ASKED to eat (other than asking to nurse when she gets a boo-boo--- I vote that doesn't count! hehe) in I don't know how long. When we had the scope done and the nurses were explaining the prep to me over the phone, they were saying how miserable B would be from being hungry due to fasting. I laughed to myself-- this kid would go for days without eating if she had it her way. A little over a week ago, we stopped the Zantac. Last Wednesday night, she ate more for dinner than she will typically eat total from every dinner in a week. Her typical amount for the week, eaten in one meal (which was a slightly larger than normal toddler meal, but a lot for her). And she still had room for ice cream! But here is the kicker-- normally, we have to practically beg her to even accept the spoon that we are offering, forget her trying to feed herself, though she knows how. But Wednesday and every meal since, she has been feeding herself, without a need for more than a couple of prompts during the meal.

So it could be a growth spurt, it could be something else. But I think if we are seeing this still in a week from now, it was the Zantac. I am pleasantly surprised. I knew the Zantac wasn't really doing much for her but I also knew she wasn't reacting to it, so we continued with it, hoping that it would lessen her reactions. But now that I see my girl without it, I am sincerely blown away. I never thought I would see B want to eat, to be interested in eating, to ENJOY her meal.

Today. . . .
So fast forward to today. She's not pigging out, but her eating is still much much better than it has been in months. Beans were a fail and we saw a decline in her appetite with that, but it is picking up steam again. I have nothing more to say other than I am so happy that even though, yes, she still has her picky toddler moments, food is once more interesting. And maybe there will be some positive new recipe results come soon!

Quickie Recipe Modification for Pancakes!

Just a quick one today! We are currently moving through a trial of white beans (eek!) and on day one, B did not like them, and they really didn't care too much for her either. So for today, day two, what did I do? Yep, I made beans into a baked good, well, a pancake. And I promise you, it wasn't gross and you could not taste the beans. And how I did it is embarassingly easy.

Step 1: Take the recipe for Happy Heart Pancakes

Step 2: Mix everything according to the recipe. Before adding in the milk and coconut oil, add in 2/3-3/4cup mashed white beans (cook them for awhile before mashing of course-- should be refried beans consistency). Blend well with your trusty pastry blender, or a sturdy fork. Once blended, add in milk and coconut oil as called for in recipe. Toss in one extra tablespoon of brown sugar/coconut sugar for good measure and mix well.

Step 3: Make pancakes in your skillet

Step 4: Eat the pancakes in amazement, as you cannot taste the beans and the pancakes are incredibly light and fluffy. Affirm that you are, indeed, a fabulous cook and pat yourself on the back. Maybe reward yourself with a few Enjoy Life chocolate chips. . .

That's it! It will add an extra protein punch to this breakfast treat and no one-- adult or small person-- will be the wiser! happy cooking and happy trickery!

Mixed Blessings and Patterns

From the time our children are born, and some would argue before then, they are seeking patterns. The human brain is programmed to find patterns, in faces, in concepts, in everything. We use patterns to help us better understand the world around us. For us FPIES parents, we use patterns to navigate the day to day, to keep our kids healthy, and to look for hope.

Its so strange to me-- the very patterns that can seem so devastating are the same patterns that we use as guidelines for keeping our children healthy. I was talking about "red flags" the other night with a lovely friend and fellow FPIES mama-- how our kiddos have certain warning signs, "red flags" if you will, that tell us, the parents, that something is just not right. For B, it has been skin symptoms for the last 6 months or so that have been added to the repertoire of patterns in how her reactions present. In addition to the reflux, the diapers, the behavior and sleep changes, we now see rashes, hives, welts. It is her body's new way of getting us to listen, to slow down, to re-evaluate. When I see these signs and her discomfort, my heart sinks. I feel sad for her and in my head I can't help but think, "No, not again! Not THIS food too!" 

And these same symptoms, these same heart-sinking feelings--- these are what save our children. This is OUR "ace in the hole" as parents, if you will. Learning the patterns, knowing the child, and learning how this beast manifests itself in them. It really is a mixed blessing. Until there are tests or litmus paper thingys we can stick to their foreheads for answers (how nice would THAT be?!), we would be lost without these dreaded patterns. For B, recognizing these "red flags" is what has and will continue (hopefully) to save her from full blown reactions, from further interruption in her happy days and development. Being able to interpret and identify these patterns gives her more toddler time. More time to paint and less time to puke, to be blunt! 

So as we pass by another fail (lemonade! grr) and move on to a new trial in the AM (canellini/ white beans), I will try to focus on the usefulness of these patterns. FPIES is a nasty disorder but if I can better understand and utilize what it throws our way to HELP my girl avoid future distress, so be it, I will do it; I will use the symptoms of this disorder as a tool to thwart itself from taking more than it has to from our sunny summer days.

My daughter surely gets her lack of patience from somewhere. . .

Well, the clock is ticking. B had her scope done this past Monday morning. She had an upper endoscopy and a partial colonoscopy as well. The prep was HORRIBLE (lots of hysteria, reflux, choking, gagging, throwing up in her mouth, etc from my poor girl)--- laxatives and enemas wrecked her nerves and system. She put up a huge fight when they were trying to put her under (via gas) but the procedure itself went very well--- they took a good amount of biopsies and the initial pictures look clear. Just impatiently waiting on those biopsy results. . .

My hat is certainly off to all of you moms and dads out there that go through these procedures routinely with your children. Seeing B so upset pre-op and post-op was certainly no shock, but it was not exactly a pleasure cruise either. During the enemas, she actually was screaming and crying hysterically saying, "That medicine killed my bottom!" and shaking all the while. I can't imagine having to put her through this on a regular basis-- we have been truly lucky that this was our first experience, since she has been dealing with this disease from day 1. But the good news of it all: she is bouncing back well. She is not eating more than a couple of bites a day at this point, but we didn't expect much more. She is having a harder time swallowing foods again, but once more, we expected this. Last night was a rough night but she was playing well today, other than a little extra fussiness. I am just hoping that whatever the results are, that they offer us a little bit more direction, maybe a few more answers.

Food trials will likely resume in another week or so and we are going for a biggie---- white beans!!! Either northern beans or cannellini!! So nothing canned, I will be preparing them the "classic" way. I will have a new slow cooker recipe to go along with them I am sure. And on an unrelated note, be on the lookout for an ice cream cone recipe. I want ice cream cones, for goodness sake, and my big girl deserves to have them! ;)

So for now we wait, watch the clock, and distract ourselves with the kitchen redo and with adventures to kid friendly jaunts. Hoping for some answers soon!!!

A Fresh Coat of Paint and Snack Bars

It all started with a kitchen. A place for B to have something safe, something creative, something that was developmentally appropriate for an older infant and budding toddler. And today our story continues to grow in that same room of the house-- the kitchen. In a different country from where we first began of course. . . ;)

We are in the middle of a kitchen remodel/overhaul/insanity/what-have-you at the moment. When we moved in last September, the kitchen was the first room that I wanted to demo. It screamed 1972 and it had not been well cared for. The walls were heavily textured, dust and grime had settled in the cracks and the room, despite its two lovely windows and glass exterior door, was DARK. I will spare all of you the gory details of the first few days of this undertaking as we are still deeply immersed in this project, but there are two things I wanted to say about this. One, my walls are now smooth and a lovely pale pale green (thank you, mouse sander and Behr Paint Plus Primer for saving me from the dungeon!). And two: as I cleaned out the kitchen cabinets, as I sanded walls and as I painted, I couldn't help but see the parallels to the every day "upkeep" of maintaining a healthy child with FPIES. 

Cleaning out the cabinets.  . . There were fun cake pans, cookie cutters, and the noticeably "doubled" sets of kitchen gadgets and pans (B's and ours). Our tools that not only keep B safe but that also keep her interested,  that make her food seem just as special as any other toddler's might be. We WILL have celebration food and we WILL have  some degree of feigned normalcy; I swore this from the start. 

It was a nice trip down memory lane. I recalled her first cookies, her first muffins, her first mama-made treats. I remembered her smiles, her excitement and sometimes, her perplexed looks when she first experienced whatever the latest concoction was. I mulled over our past victories and I, in a sense, mourned our losses. But cleaning out the cabinets is a necessity in a kitchen redo just as much as "cleaning out the cabinets" is necessary in managing B's diet. We can celebrate the safe foods-- the old standbys, the new favorites, the ones we are hoping for-- and we can clean out and throw away the fails, the ones that disrupt our kitchen and lead to chaos when unchecked. 

Sanding the walls. . . now THAT was a task! Lots of time for reflection here! All I kept thinking of was the fine tuning that her diet takes, the necessary changes to making a food work. Changes needed to make a recipe work. I have made somethings that quite frankly, were C-R-A-P! But I keep sanding, I keep whittling away at the recipe until it works, until it is useful and until it is palatable, at least to my tiny gourmand!

A fresh coat of paint. . . we have had some recent set backs that I must say, have dampened our moods around here. The FPIES fails coupled with distinct IgE symptoms, the cheeking and swallowing difficulties, the reactions from the medical tests and the tests looming in our near future. . . it is time for a fresh coat of paint. It is time to sand away whatever it is that is bothering my beautiful girl and it is time to change direction. The FPIES base is still there, but we will build something beautiful over top of it. Something that starts working again, something that moves B to a safer place.

I will keep updating on the kitchen and on B's scope and development, but since I have been so remiss for so long, here is a recipe that is long overdue. A great one for snacking, quick meals, and energy. A Baby B energy bar (though to be clear, she does NOT need any more energy than she already has! Haha!). Like most of the recipes on here, it IS "customizeable", but I will write down what we did first and then disclose other options within the recipe. Have fun and enjoy this great on-the-go snack for summertime!

Baby B's Powerhouse Squares

2-3 cups quinoa flakes (millet flakes or rolled oats will work as well)

3 small bananas mashed (or 3/4 cup of dense veggie or fruit, also try applesauce or pear sauce)

1 Tbsp brown sugar/coconut sugar/honey

1 tsp vanilla

1/2-3/4 cup coconut flakes (finely shredded)

1/4 cup dried fruit, diced (we used strawberry and mango)

1/4 cup sunflower seeds (or your favorite roasted seed or nut, finely chopped)

1/4 cup pear sauce (I am sure apple sauce would do the trick as well)

Sunflower seed butter (or fav seed/nut butter, OR jelly/jam)

Preheat the oven to 350 degrees. In a large bowl, mash the bananas. Add 2 cups quinoa flakes and blend with pastry blender until well mixed. Add in all remaining ingredients except for the sunflower seed butter and blend thoroughly. Dough should resemble crust mixture for a fruit cobbler. If dough is too wet (should NOT be runny at all) add in more quinoa flakes and a touch more of the coconut flakes until desired consistency is met. 

Line an 8X8 baking pan with foil or parchment paper. Divide mixture in half. Press one half of the mixture into the pan and even it out with a fork. Then, spread sunflower seed butter thinly over top of first half. Once sunflower seed butter has been spread, press remaining half of mixture overtop of the sunflower seed butter. Again, use a fork to even the mixture out and to make it flat. Place pan in oven and bake for 25-30 minutes, periodically checking after the 20 minute mark.

Once firm and golden brown on the edges, remove from the oven and allow to cool for at least 10 minutes. Once cool, remove from pan and slice into rectangles or squares. Serve immediately plain or with jam/sunflower see butter spread thinly on top of each bar. These can be frozen as well-- just don't add toppings until ready to eat! I wrapped each bar individually in press and seal wrap (LOVE that stuff!) and then filled freezer safe ziploc bags with the individually wrapped bars. 

I personally LOVED these and these are certainly a elim diet nursing mama's good friend! Enjoy and let me know what ingredient combos you use! The possibilities are endless!

Swallowing, Scope and Surrender

Its been a little bit since I posted last. For one, I wanted to leave up our fundraiser post for a little bit to raise awareness and to direct people that found us on here from our flyers. And two, I haven't really known what to write. With our posts, I like to try and motivate, to try and encourage creativity, to try and find hope in the midst of all of the frustration.

Well, today we are all about the frustration around here. B is ok. But something is up and we just can't figure it out. This started a few months ago when her food aversions started kicking up again. Then we had a month with random vomiting episodes when she was eating--- never seemed to be any causal link between a specific food and the vomiting--- it just simply WAS. After the fourth episode of stomach emptying vomit, I called the GI and he suggested a swallow study. We went in the day after Mother's day and had it done; they used flavored barium. For one, the study itself took forever-- they kept tilting the table side to side and back and forth because the barium wasn't moving quickly enough through her system, they said. My poor girl was not having any of this and had to be held down by two staff members and N and I. I ended up with a fat lip and B had tons of bruises. :( Despite the slowness of the barium's movement, we got the report that everything looked normal! Great! Well, less than 24 hours after the barium, the mucousy, black diapers began, accompanied by lots of reflux flares and a horrid diaper rash. For the first few days I thought, this must be normal-- her body must be trying to move everything out, right? Well, by that Wednesday, she had successfully passed the barium so I thought, ok, it will be ending. WRONG. The diarrhea continued and even worsened in different intervals and her rash caused skin breakdown and bleeding once we were a week out from the test. She had welts on her diaper area that looked like horsefly bites. Awful, awful. For the first week after the procedure, she was refusing almost all food and most drink. After the first week, she started drinking more, though still wasn't even nursing very much. When we hit the two week mark she started to improve. Apparently, there are all sorts of things that can be present in flavored barium (won't be giving her THAT again!) and in my mind, she reacted to something in it. Both the radiology and pediatrician's offices said that they had never heard of B's response as being anything like a normal response. At this point, we were seeing a lot of food refusal still.

So we got through that and B's diapers still aren't back to her "norm" but if there is one thing that we know about FPIES, reactions often long overstay their welcome. We had been holding off on food trials until her diapers improved so I decided to try a few spices/herbs since her eating was still horrible. I settled on cinnamon and made the most delicious cinnamon graham crackers (IMHO!) The first day, she ate a cracker by scraping her teeth across it until she ate it via tiny tiny crumbs. This behavior concerned my but at least she was EATING, even if it was in this manner. She told:"Those are your favorite crackers that you ever had" ("you" meaning herself of course, lovely toddlerisms). I was so stoked. But at bathtime, I took off her shirt and the skin between her shoulder blades was bright red and covered with mosquito bite sized bumps, kind of in clusters. After bath, I put on hydrocortisone (Rx) and gave her oral benadryl. By the AM, it was completely gone-- just a bit of scabbing from where she broke the skin itching. I gave her another cinnamon cracker that AM, within minutes she was itching her back again and at just over an hour, her eye started swelling. It wasn't bad but it was noticeable from across the room. Contacted the allergist and he confirmed that cinnamon was likely a fail.

And so, as always, we moved on. We moved forward. But then I reintroduced fish to B after not giving it to her for a couple of weeks (she just kept refusing it so I thought she needed a break so it could become "new" again). She acted excited and acted like she liked the taste, just as she did when we first trialled it. But then she was chewing and chewing, and not swallowing. She was taking tiny bites and I had cooked the fish until it was literally falling apart, it was so soft. But she ended up gagging and needing to spit it out after about 10 minutes of attempts at swallowing. And then she tried to eat  some more and the same thing happened. At that point, she started refusing the fish again. That was when I thought, "We have a problem." She wanted to eat the fish but something was stopping her from swallowing.

So in the AM, I called and left a message for the GI. When the nurse called back, I told her about the fish and that B was doing the same thing with baked goods (cookies, muffins and cakes) and we had initially assumed it was behavioral but after seeing her want to eat and become frustrated when she couldn't swallow, we got concerned. After a bit, we heard back from the GI-- they want to scope her. An upper and a partial lower (he said it will be very simple so that is good). And now we wait-- it sounded like it will be scheduled soon and at least N has some scheduled time off from work coming up next week--- hopefully it will all coincide.

I am on the fence-- I want them to find something but I don't. I want there to be answers but I want there to be an end in sight. There are so many thoughts going around in my head and I am so torn as to what is best for B, what could have been done better by myself in the early days, what could have changed the outcome. I know this is a routine procedure, I know it was only a matter of time before she had to have one done, I know FPIES is a mean old beast that I routinely would like to kick in the head. . . . but I wish I knew why all of this is going on. Why the IgE symptoms--- the last three food fails have been accompanied by hives and/or swelling as well as FPIES symptoms, ranging from mild to bordering on severe. Why have the two most recent tests-- the SPT and the barium study--- produced reactions but caused only negative test results? The most overwhelming thought, though, is this--- I want this to be done for her. I want B to have a break. I want her to go to playgroups, do toddler stuff, all without the worry following us around that there will be a reaction, like we are constantly trying to outsmart and outrun this entity that we know as FPIES. I am done running, I am done dragging her along. FPIES--- I am B's mama and I am telling you "NO."

B's Fundraiser! Eat sweets for these little sweeties!

This Tuesday (May 24th), N and I will be at the Westfield, MA Friendly's Restaurant and Ice Cream Shop on Southampton Rd--- a family fun night we are hosting to raise money for the FPIES United Family Fund, a fund set up through the Children's Hospital of Philadelphia to raise awareness and to raise money for FPIES research. This is, of course, a nonprofit organization.

So we are hosting the Family Fun Night and if we bring in at least 100 extra people (more than their average), Friendly's will donate a percentage of all sales made between the hours of 5pm and 8pm. There will also be a raffle (raffle tickets are being sold right now!!!!)-- prizes are from the East Mountain Country Club, Simply Skin by Angela Grace, Jelly Belly's Pools and Spas, a local AVON representative, Puffer's Day Spa and Salon and possibly a very cool children's museum, that I cannot yet specify (Will get the go ahead on Monday!) So a little something for everyone! I am still waiting to hear back from some other vendors, so the list may grow, and we are STILL taking donations for the raffle, so if you would like to contribute, please leave a response below!!!

So come one come all! And once this is over, I can get back in the kitchen! Between B's barium debacle (more on that next week) and completing my music therapy recertification requirements, plus this fundraiser and plus the PIC project, I have been going NUTS around here trying to keep everything straight! More recipes by the first of June or sooner! And that is a promise you can take to the bank! Maybe I will post several at the end of next week if we get a nice turn out at our Friendly's event. Yes, I am bribing participation with recipes. :)

Even Mamas Deserve a Cookie!

Its been an interesting week-- B's barium swallow study was on Monday and it has been destroying her tummy ever since-- reflux flares, black mucousy diarrhea, awful rash and broken down skin. . .UGH. Her boycott of baked goods has intensified and she is only showing interest in some fruit. I made these cookies this AM in hopes to entice my small sweetie into eating sweets. . .and I found a new and very dangerous cookie for mama! ;) B did eventually sample them tonight after we showed her how to dip the cookie in her coconut milk. She seemed to like the taste but a lot of textures seem to be bothering her lately, so she only ate a few crumbs. 


I personally love this recipe and N and I could not stop from eating them! They taste like peanut butter chocolate chip cookies! Since I am still eliminating all nuts, I miss PB like crazy! These cookies really filled the void for me tonight! Enjoy! These are free of the top 8 and free of all FPIES common triggers, they are corn free, they are vegan and they are amazing! 

Sunflower Seed Butter Chocolate Chip Cookies

1 cup plus 2 Tbsp sorghum flour/ millet flour/ corn flour

½ cup plus 2 Tbsp quinoa flakes (or sorghum or millet flour)

½ tsp salt

½ tsp baking soda

1 small pear or small apple, peeled, cored and finely chopped

1 cup sunflower seed butter (or other alternative to peanut butter, such as hemp or almond butter)

¾ cups sugar

2 Tbsp arrowroot (or other safe starch)+ ¼ cup very hot water

¼ cup palm oil shortening or coconut manna, softened not quite melted

2 tsp vanilla extract

½ bag Enjoy Life Chocolate chips (or other safe chips)

Preheat the over to 350 degrees F. Line cookie sheets with parchment paper. In a medium sized bowl, combine the arrowroot with the bot water. Beat for several seconds with a whisk or fork and then allow to rest. Using a second medium bowl, combine flours, salt and baking soda. Set aside. Add the fruit, sugar, sunflower seed butter, shortening/manna and vanilla extract into the arrowroot bowl. Blend well with electric mixer or pastry blender. Mixture should be gooey and well blended. Slowly add in the flour mixture, blending while adding. Blend with pastry blender until flour is completely mixed into the batter. Add in chocolate chips, stir well. 


Using a small ice cream scoop or melon baller, form balls of cookie dough and place on baking sheets in rows. Press gently with a fork to flatten slightly. Bake for 12-14 minutes at 350 degrees or until cookies feel firm and are slightly browned on the bottom. Allow to cool on baking sheet for 10 minutes before transferring to wire racks or a plate. Cookies will solidify further once cool. ENJOY!!!!!!!!!!!!!

FPIES as a Garden-- Hedging our Bets

The garden is arranged with neat little rows. . . three varieties of beets (peppermint ones, golden ones, and detroit dark red-- had to represent my heritage, yes?!), baby spinach, and broccoli. And then, two more veggies. But we only have three safe ones!!! And so, I am hedging my bets.

I planted cauliflower on one far end and tomatoes on the other far end of the garden-- all of her safe foods are clustered together but the unknowns are on the outskirts. I didn't even plant any known UNSAFE foods--- want this to be as clear cut as possible. A definite fail or a definite pass.

I think cauliflower is a good bet-- broccoli is a big favorite of B's and I would let her eat more if her body didn't freak out every time she ate more than a taste of a veggie! And cauliflower is similar to broccoli, right?!
With beets, spinach and broccoli, she only gets 2, 1oz servings of each, each week. SO a veggie a day with a day of veggie rest in between. :) We still have to be careful with preparation and they all have to be twice cooked. . . but I figure if she has more safe veggies, even if they are all conditional foods so to speak, we could give her little bits of each a couple of times each week and fill in a few more holes diet-wise.

Tomatoes are a mama-gut bet--- I have a good feeling, nothing more and nothing less. And they are different. Maybe different enough to be safe? I am hoping!

So later this week when I surround my garden with happy little marigolds (to act as a pest barrier) and a happy little fence (bunny prevention!!!), I hope that we are hedging our bets as carefully and as effectively as we are hedging our garden.

FPIES as a Garden

Spring is certainly upon us and thank goodness! I thought I would never see anything but a white lawn staring back at me whenever I looked out of our windows! We haven't quite lived in our house for a year now and there is a TON of yard work to do, thanks to the lovely prior owners. SIGH. I do like working in the yard, creating something out of this very messy blank canvas that is out there in the back yard. As I was digging, planting and weeding today, I couldn't stop thinking about how similar all of this work was to our everyday work with building B's diet in a safe and (hopefully) interesting way.

One of the previous owners (I am guessing YEARS ago) seems to have been something of a gardener. I keep unearthing randomly placed flowers and shrubs, and slowly as we clean things up, I see that there were once gardens in these places. Hostas, hybrid lillies, ornamental shrubs. . . I keep finding these in the strangest of places. Last fall, I dug up and transplanted about 40 (!!!!) lillies from various spots in the gardens and yard. There was a huge mass of them in one garden in particular-- becoming root bound and unhealthy. So I separated them, gave them new homes, and now in the spring I have these huge new plants, flourishing. Plants that I was hesitant about keeping in the fall have now become beautiful additions to the garden and are thriving.

With B's FPIES "journey," we have seen a lot of parallels. We are constantly tending the garden, adding in new "plants" and hoping that they will thrive and that the garden itself will improve from the additions. And when the new "plants" fail, we till the soil and try again once the ground is smooth again and ready for planting.  Zantac and probiotics control the weeds and keep the garden as free of harmful pests as possible. And the biggest parallel-- uncovering surprises. As I dig and reshape our yard (with the help of N of course and with the encouragement of B from her station in the sandbox), I find treasure in the compost heap (healthy, beautiful plants), treasure in flowers that I was sure would not winter over (but did!!! Even despite our snowy months!). Sure, most "common" toddler foods don't affect the B garden positively (dairy, wheat, etc), but we have found treasure in things like quinoa, mango, and coconut, foods I never would have expected to be staples in the diet of a toddler. And the hidden surprise of a food that was only tolerated in tiny amounts last year now becoming a staple in B's diet. Now being tolerated by her body, now being welcome in her garden.

Of course, like the garden, tending to our children's FPIES is constant work. But there are rewards amongst the weeds, amongst the compost. And there are surprises! And there is, even in the tiniest ways, eventual growth. So I will, as the rest of you will I am sure, continue to dig, continue to shape and continue to nurture, in hopes that one day, we will see the ultimate growth that we are hoping for, for her body to begin to tolerate more than it rejects, for my beautiful flower to be free of the threats of FPIES.