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.