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No News is Good News!

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Well, it has certainly been a while since my last blog post.  Today is Global FPIES Day so I figured it was a perfect time to share an update.  A lot has happened in our lives over the past 20 months or so, I’ll do my best to just give the abridged version.  The bottom line is that E is doing wonderfully!  He has officially passed trials of rice, dairy and egg!  These foods have opened up so many new foods for us and we are so excited!  The picture above is of E eating rice pudding.  This is a treasured family recipe that contains rice, dairy, and egg (and not much else) – all things that he couldn’t eat 6 months ago!  It makes my heart so happy to see him enjoying the same comfort foods that my grandmom used to make for me.  The only problem is that now I have to share 🙂

So, if that was all you wanted to know, please feel free to stop reading now.  For those of you that are in the throes of FPIES or really bored, I’ll do my best to elaborate on what has happened since my last post, how we made decisions, where we are now, and our next steps.

It Gets Easier

First, I have to tell you that life with FPIES gets easier.  It’s hard to believe and I don’t want to minimize the struggles of others, but please know that it often does get easier.  At least it did for us.  Or maybe the rest of life gets harder.  From the first minute your baby is outside of your body, all you are focused on is feeding and nourishing that child.  Often you are starting your first nursing session in the delivery room.  Your child is so delicate and initially has so few needs but food is the most important.  As a new parent I spent all of my time feeding or worried about feeding E.  Every two hours from the time the feeding starts, newborns are ready eat. E was a lazy eater and a nursing session took about an hour.  So he was eating every other hour.  I’m pretty sure all I did was feed this kid for weeks!  As your child gets older there are more needs you have to meet.  When you don’t have the food one down, this becomes very stressful.  Now you are just piling on the stressors.

For us, we got to a point where we had identified E’s triggers.  He was no longer reacting to new foods and we had determined that there were 7 foods to avoid.  Don’t get me wrong, a few of the 7 were big ones – Dairy, Egg, Soy; and a few were easier – Rice, Oat, Coconut, and Shellfish.  As difficult as it can be to avoid entire food groups, this knowledge was a huge turning point for us.  It was almost like we could move on with our lives, which was good because our lives were moving on.

Feeding was no longer our biggest stressor

We spent November and December 2014 going from food challenge to food challenge.  I thought it was a stressful time – always on the lookout for symptoms, right in the middle of holiday celebrations.  In January 2015 my dad suddenly passed away.   I could write an entire post about this event, but almost two years later I still don’t feel ready to do that.  Suffice to say that E’s food allergies took a back seat to almost everything else.  The grief was so overpowering that I didn’t really have the energy for anything else.  As I mentioned in my last post, I attempted to use some easy food trials to boost my mood, but the fails were even more devastating.  I had to shift my focus away from E’s food allergies and get myself and my family through an awful transition.   But this was possible because all I had to do was to avoid the 7 foods that were E’s triggers.  In fact, being able to wrap my head around that one constant was almost comforting.  So we moved forward in life while treading food allergy water.

We got through the initial grief and were faced with other distracting stressors – we bought a house, embarked on potty training, and I hunkered down to finally finish my dissertation.  We decided not to force the food issue until we were mentally ready, which took a while.  I mean, why mess with the one stable thing in our lives? All of the brain-washing, I mean teaching, that we had been doing since we entered the allergy world was paying off.  E was old enough now to know about his allergies and was really good about making sure food was safe before he eating it.  He also has some pretty awesome cousins who looked out for him and made sure to keep him safe at family parties.  He was used to having his own safe version of party foods and didn’t seem to be bothered by the fact that his cupcake was different from everyone else’s.

Back to Trials

We enjoyed homeostasis for a while but eventually we felt ready to tackle some of the lingering questions we had about the winter’s food challenges.  Remember that he passed oat, rice, and dairy challenges in the hospital but then had weird, possibly chronic reactions (lethargy, rashes, etc) once we continued the food at home.  We ended up pulling all of those foods and just waiting it out.  In the spring we had an appointment with E’s allergist, who we love.  She suggested approaching the food trials a little more realistically.  For example, it wasn’t really necessary for him to tolerate a 1/2 cup of rice every day for 2 weeks. Rice isn’t that important to our diet and he was unlikely to eat rice that way in “real life.”  Her thought was that we should be a little more gradual, introducing the foods every couple of days, and allowing his body to get used to it over time.  It was also probably ok to stop once he was eating rice a couple of times a week or two to three days in a row.  She also thought it would be helpful to back up the dairy trial to baked dairy.  When you bake food proteins, the heat breaks them down.  Sometimes they are broken down enough that the body doesn’t realize it is the same protein that should cause a reaction.  It also allows the body to get used to the food before introducing the full protein.

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So last summer we tried baked dairy.  Jonathan made white bread with cow’s milk.  E ate it everyday in his pb&j and it was great, no problems.  We decided that dairy baked into a matrix is safe.  (A matrix means that the dairy is pretty much unidentifiable when the food is eaten, like the milk that is mixed into the bread.  You can’t look at the bread and see dairy, but it is there, though presumably pretty broken down.)  We got daring and tried pizza with melted mozzarella on top.  So, baked, but not for very long and not into a matrix (it was still identifiable in the finished version).  E loved pizza! And still no problems.  As a last step to our cooked dairy experiment, I made macaroni and cheese.  E also loved macaroni and cheese!  However, this one was not as loved by his body.  After a couple of days, he had awful diaper rash.  The kind of rash that resulted in both of us crying during diaper changes.  So we pulled dairy that was not officially baked into a matrix.

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Ethan’s 3rd Birthday Cake – a sandcastle theme with soy and dairy ingredients.

We waited for the rash to clear up and for everyone to feel emotionally ready again and and then tried baked soy. After the baked dairy pass, I felt good that baked soy was going to go well.  I even kicked off the trial at his birthday party by putting silken tofu and soy milk in the cake.  Thankfully he didn’t react that day, but after a few days we started to see the rashes again and decided that baked soy (and so all soy) was a fail.

So much of the FPIES literature says that the symptoms go away by age 3.  Here we were kicking off 3 with a soy fail and a recent dairy fail – it was disappointing and disheartening.  It took a while for us to feel emotionally ready to start another trial.  We decided to go with rice this time, following the doctor’s recommendation of a very gradual introduction without pushing to large quantities every single day.  I don’t know if it was the gradual approach, the fact that we were finally officially out of diapers, or if E had truly outgrown the allergy since the previous trial, but he passed the rice trial!  We felt confident that any amount of rice that he would eat would be safe, including several days in a row of Rice Krispies.  We still don’t eat a ton of rice but crossing a food off of the list was incredible!

The rice pass gave us the confidence that we needed to move forward with more trials.  We embarked on a baked egg trial.  Egg is a big one – it’s in so many foods.  We decided to dust off our strict food trial protocol for this one.  So we did 12 days of baked egg, mostly in the form of banana muffins.   It was a success!  We jumped into scrambled eggs, saw no reactions and haven’t looked back!  E now regularly enjoys eggs in baked goods and loves scrambled eggs.  I had forgotten how easy it is make scrambled eggs and I’m thrilled to have an easy go-to meal on hand for days when I don’t feel like cooking.

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Scrambled Eggs get Two Thumbs Up!

We were on a roll and it had been over a year since the macaroni and cheese reaction so we felt ready to try dairy again.  We knew that baked dairy was safe so we started with cheese this time.  I figured it was still somewhat processed but got at “raw dairy.” Again, we started off with the strict food trial protocol.  We had a couple of little issues related to sticking with the protocol and some questions about whether symptoms (coughing, runny nose, lethargy) were related to the trial, seasonal allergies, hot weather, or just being a on vacation.  We didn’t have enough data to clearly blame the cheese so we added some flexibility into our approach.  We stopped the cheese for a couple of days, started again, took breaks when we needed to.  We were pretty sure the other factors were the cause of the symptoms but dairy is everywhere and wanted to be sure.  Once we got to a good baseline, we restarted a strict protocol, this time with a cup of milk.

E was nervous to drink “cow’s milk.”  How many three-year-olds specifically state the source of the milk?  After his first taste he declared that it “tastes just a little bit like cow” and finished the cup.  However, the next day he wasn’t really interested in drinking it and asked for hemp milk instead.  I guess milk is more of an acquired taste than I realized.  In a desperate move to get through the trial, I added sugar and cocoa and we continued the two week trial using chocolate milk.  The trial was a success and it only took a couple of days to make it clear that he was no longer going to get chocolate milk every day.

Celebrating a Dairy Pass!

The lack of reactions to milk opened up a ton of doors! E’s mostly healthy diet took a nosedive as we introduced to him to the world of cheese, yogurt, and ice-cream.  He is so excited for this new safe food and often tells strangers that dairy is safe (which I then have to explain).  Every time he tries a new dairy-containing food, his eyes light up and my heart melts a little.

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Frozen Yogurt for Dinner!

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Milkshakes!

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Ice Cream Cake!

So, that’s the brief food-allergy related synopsis of the past 20 months.  Three foods (2 of them biggies) off the list!  The FPIES journey isn’t a straight line, that’s for sure.  We had a lot of false-starts and set-backs, but we got there.  We are now still avoiding 4 foods, including soy, which is more pervasive than most people realize.  But we are optimistic about the future.

Moving Forward

In other news, we are settled into our new home, which we love, and I finally defended my dissertation.  Most excitingly, E will become a big brother any day now!  E is now 4 years old, completely out of diapers, incredibly verbal, fairly independent, and has outgrown many of his allergies.  Starting over with a newborn is daunting in many ways, especially knowing that we might be jumping back into the early days of FPIES.  I’m trying to be optimistic about her living an FPIES-free life, but I feel prepared this time.  I know what to look for, when to get help, and what to expect.

We’ll hold off on new trials for a couple of weeks until we get through the initial excitement of the baby’s arrival.  However, I am determined to do a shellfish/shrimp trial before Christmas.  Our family has a tradition of shrimp scampi on Christmas Eve and I really want E to get to partake this year.  As for the other foods – we’ll get to them when we are ready.

I’ll try to check in again soon to let you know about how our little princess is doing and when we are ready to attack the rest of E’s list.

If you are an FPIES-parent, please hang in there.  The beginning is so very difficult but the victories are so very sweet.  Most children have the results that E has had, you’ll get there.

I also have to send out a huge thank you to all of our family and friends.  We are so lucky to have so many compassionate and caring people in our lives.  They do whatever they can to keep E safe and me sane.  So many are willing to provide safe food or change a menu for E.  Your willingness to accommodate my son means more than I can ever express.

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So Much for Our 4-Year-Old to Celebrate this Year!

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A Season of Celebrations

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I am ready to celebrate! Sunday we declared rice an official pass and yesterday E passed the initial oat challenge!!  We still have to finish out the oat trial, but things are looking good!

If you recall, I was not looking forward to this December.  In fact, I was dreading it.  I was so focused on all of the challenges that we were set to face that I didn’t even think about all of the things that we would have to celebrate this season.  I was so caught up in the stress and negative aspects of FPIES that I totally forgot that I was going to get to spend Christmastime with a two-year-old!  Without knowing it, my own little elf has reminded me of what this time of year is all about.  So, in contrast to the post I wrote about a month ago, I want to share with you all of the fun that we’ve been having this holiday season, despite living with FPIES and enduring serial food trials.

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We kicked off the season with a dairy challenge the Monday before Thanksgiving. I know, how festive!  Despite the stress and uncertainty of the trial, we managed to have a wonderful Thanksgiving.  Jonathan’s sister and her husband hosted a beautiful family dinner.  They graciously offered to make it safe for E but we decided to err on the side of caution.  The possibility of mistakes or cross-contact was too high, especially during the dairy trail, so I brought a safe dinner for E.  It wasn’t necessarily a traditional Thanksgiving meal but he gobbled up his turkey meatball, mashed potatoes, applesauce, green beans, and corn bread.  He also ate in a highchair so that he was a little more removed from the table (and allergens).  I don’t think he even noticed that he wasn’t at the table or that his dinner was different.  He loved eating with the whole family, especially his cousins!

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After Thanksgiving, the countdown to Christmas began!  For as long as I can remember my mom has always made a paper chain to help us countdown to Christmas.  I was so excited to make one for E this year because he can finally understand what it signifies.   Every night before he goes to bed, he rips a link off and declares that we are “one day closer Christmas and Santa Claus will be here.”  It’s the cutest thing ever!

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After two weeks of trialling dairy we aren’t totally sure it’s safe and decided to retrial it after things settle down in January.  It’s disappointing to spend another holiday dairy-free but we are becoming pros now at finding substitutes and modifying traditions.  E is in love with the idea of “kissmiss coosies.”  In addition to the safe chocolate chip cookies, we have been experimenting with recipes for shortbread cookies (which are naturally egg-free!).  Baking and decorating the cookies is almost as fun as eating them!

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Next up was the rice challenge, which went so well we were able to combine it with a visit to see Santa Claus.  E has been so excited by the whole idea of Santa Claus and talks about him every day.  I think he was a little starstruck when he first met the jolly old elf in person, but managed to file his request for his “own kitchen” (which is all he’s been talking about!).  He was also lucky enough to get a private visit from Santa Claus who arrived at his Grandi and Grandad’s house via firetruck!  The icing on the (allergen-free) cake was definitely the email that he received from Santa last night.  Santa sent a video that announced that E had made it to the nice list!  We have watched this video about 10 times already and each time E gets more and more excited!

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We’ve also been spending time watching some classic Christmas TV specials and, of course, choosing and trimming our Christmas tree.

E’s excitement about Christmas and Santa Claus has absolutely been contagious.  I think actually at this point I might be more excited for the big day than he is.  I can’t remember the last time I was looking this much forward to Christmas!  Seriously, I’m giddy.

When you are in throes of FPIES, or any other stressor, it’s hard to step back and remember that this is not the only thing going on in your life.  The holidays are full of parties that center around food (food that is full of dairy, egg, and shellfish).  So, having a child with food allergies can be stressful.  It means more planning.  It means more work.  It means constant vigilance.  But it also means that we will spend lots of time surrounded by people we love and who love us.  It means that E will get to hang out with his family, many of whom we don’t see enough.  Sure, some traditions have to be tweaked, but E is two! He doesn’t know that there are cookies that we’ll omit from our baking menu this year.  He doesn’t care that he can’t partake in my dad’s famous Christmas Eve shrimp scampi or Aunt Jean’s lasagna.  He’s never had those things and would probably even prefer a peanut butter and jelly sandwich.  I’m definitely guilty of mourning the things he can’t do and I love that he is always ready to remind me of all that he can do and what’s important to him, and what’s really important about the holidays (hint: it’s actually not the food).

I hope that the joy of our Christmas season can bring hope to those of you that are in the thick of life with FPIES or any other challenge.  We’ve had so much fun watching E getting excited for Christmas and enjoying all that comes with this time of year that we’ve been able to shift our focus away from FPIES (even though we were in the middle of some pretty serious food trials).  The opportunity to take a step back and remember that there is so much more to life than FPIES has been a bit of a Christmas gift (and lesson) to me.

Thank you for celebrating our passes and Christmastime with us.  I wish you the joy and excitement of a two year old on Christmas and a happy and healthy new year full of your own celebrations!

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Post-Neocate News

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More than a month ago I posted about what was almost our last full day of Neocate.  That’s right – almost.   Nothing is ever easy and straightforward, right?  Here is the update…

Right after I wrote about my mixed feelings about giving up Neocate I got sick.  I had an awful head cold and being the selfless person that I am, I was kind enough to share this cold with E.  It was a weird cold, it came on pretty slowly but then hit me really hard.  Luckily the worst of it was over a weekend and my wonderful husband allowed me some sick time so that I was able to recover and he focused on keeping E as happy as possible.  It’s really hard for a rambunctious little boy to be sick and tired.  Jonathan is a saint and took great care of us!

One of the side effect of E’s cold is that he wanted his comfort food – Neocate.

Let me back up a bit.  I have to admit that I didn’t really have a plan for weaning him off of the Neocate.  I had no idea how it would go, but kind of assumed that he would be happy to drink almond milk or hemp milk and leave the formula behind. I hadn’t really decided how I was going to substitute the Neocate so I started to give E the choice of what he would drink in his cup.  He drinks 3 cups a day and they had always been Neocate.

So  here’s how it went:

Me:  ” Do you want Almond Milk or Hemp Milk in your cup?”

E: “mesin cup”

Me: “Almond Milk?”

E: “NO, mesin cup”

Me: “Hemp milk”

E: “NO, MESIN CUP”

Me: “you want your regular cup?”

E: “uh huh”

And there you have it.  I have no idea what he was actually trying to say.  E is still perfecting the whole talking thing and we are currently at a stage where context clues are critical.  It sounded kind of like “medicine cup,” which makes sense because Neocate is kind of like a medicine.  But we’ve never called it a medicine.  In fact, Jonathan and I actually had conversations about what to call his Neocate.  We didn’t want to call it “milk,” because it wasn’t milk and we didn’t want him to think it was ok to drink milk.  We also didn’t want to call it “formula” or “Neocate” because it sounded too clinical.  So we settled on just calling it his “cup.”   Regardless of what we called it, he made it perfectly clear to me that he wanted his Neocate cup.  We had this conversation three times a day for about a week.  If I tried to slip him almond milk or hemp milk, he made a face, handed it back to me, and reminded me that he wanted his “mesin cup.”

I decided not to fight it for several reasons.  One, he was sick.  I know that when I am sick I like to indulge in comfort foods and don’t want to have to explain myself.  Two, I was sick and I didn’t really want to, or have the energy to, fight with him.  I knew that we had enough Neocate stockpiled to last a couple more weeks and so there was no reason to push the issue while we both had low resources.  Third, and most importantly, I didn’t want the transition to be traumatic.  I didn’t want him to view this as an him vs. me issue.  I didn’t want him to have negative feelings about the other types of milk or just resist them because I was pushing so hard.  So I let it go for about a week.  I still asked each time what he wanted to drink and still presented two options: almond milk and hemp milk.  And he continued to request the old favorite.

Once we were both feeling better I started to push a little harder.  I actually wanted to do a trial of shelf stable almond milk. Blue Diamond makes individual servings of the shelf stable almond milk, which I wanted to be able to keep on hand for when we are out of the house or in a pinch but  E had only ever had the refrigerated version.  The shelf stable version had at least one different ingredient (tapioca starch) and because I wanted to know this safe to drink when we were away from home, I thought a full food trial was in order.   I was feeling a little brave, so I did make one change to our normal food trial protocol and decided to give him a full serving starting on day one.

I started to replace his morning cup with the shelf stable almond milk.  The first day of the trial I didn’t give him a choice.  I just handed him a cup of almond milk in the morning.  He tried to resist but I explained to him that we had to try a new almond milk so he had to drink that cup in the morning and he could have his regular cup later in the day.  For the first couple of days we did our almond or hemp milk dance for the next two cups.  He ended up getting Neocate for both.

Then I started to bargain with him a little bit and we compromised on one cup of Neocate a day.  He had to have his one cup of shelf-stable almond milk, then he got a cup of hemp milk, and then he could have one cup of Neocate.  He could choose when he had the Neocate but was reminded that he was only getting one.

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Finally we had a breakthrough!  One day he had his shelf-stable almond milk in the morning.  Then after his nap he chose hemp milk.  At bedtime I asked him if he wanted almond milk or hemp milk and he said “mesin cup.”  I said, “how about if we do another cup of almond milk or hemp milk?”  He thought about it and said “ummm, almond milk.”  I ran to kitchen and poured the almond milk before he could change his mind!  He drank it with no complaints!
The next night we went to my mom’s for dinner and I only took hemp milk, so he didn’t get a choice, but he didn’t complain and he drank it all!

That was a couple of weeks ago, and we haven’t had a cup of Neocate since. Three times a day I give E the choice between hemp milk and almond milk and he usually chooses one or the other. Sometimes he chooses neither but he hasn’t asked for his “mesin cup” since. It’s a little weird to not push his cups on him. The Neocate used to be the only way I knew he was getting the nutrients he needed, so there were days when I practically forced him to drink his cups. Now the cups are just extras. We offer them to fill the cup void and to help boost his calcium intake but his diet is complete and varied enough that he doesn’t need it. It’s crazy that I still feel a twinge of anxiety when he refuses a cup, but that goes away when the end of the day arrives and there are far fewer dishes 🙂

Goodbye Neocate!

So, it looks like we are actually finished with Neocate.  After this long process it is less bittersweet and much more sweet.  Part of me still mourns the loss of my little baby but I am so proud of the little boy he is becoming!

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Oh, and we are WEEKS away from our dairy challenge! So this may all change again…

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FPIES-Friendly Fiesta

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Today’s Sesame Street “Word On the Street” was Fiesta, which reminded me that I never posted the menu for E’s second birthday party, our FPIES-Friendly Fiesta!  (And yes, we might be watching a little too much PBS during this rainy week.)

Whenever we have any type of gathering at our house I do my best to keep the menu safe for E. This makes him feel included and gives me a chance to let my guard down and relax a little. Of course, with 7 known allergens and my fear of untested foods, it is difficult to come up with an entire menu of food that goes well together and is party-worthy.  I mean, E might be happy eating PB&J with a side of salmon patty, but frankly that’s just weird and we can’t really expect people with no dietary restrictions to enjoy that type of meal.

Luckily, this summer E passed a pepper trial.  Not only did this open up a lot of possibilities for our every day cooking, but along with some of his previous passes – corn, avocado, black beans, etc – he is now able to eat a lot of Mexican dishes (sin queso)!  So, we were able to put together an entire mexican fiesta that was safe for E and delicious.  It’s so rare and exciting to have an entire FPIES-Friendly, company-worthy meal that I had to share it!

Here’s what was on the menu:

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                 E loved everything we served but the corn cakes were by far his favorite!

Corn Chips & Guacamole

We kept the appetizers pretty straightforward and on-theme.  I’ve found that most plain corn chips only contain corn, oil, and salt.  Depending on the type of oil, these ingredients are all safe for E.  Jonathan and I love the Frontera guacamole mix.  E actually hasn’t had it, but I feel comfortable eating it around him.  While there are some foods in the ingredient list that he hasn’t had, there isn’t anything in it that should be a problem.  This combo has been a lifesaver for us at parties – we now have a safe snack that everyone loves and E can eat.

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Fajita Chicken

The main dish was fajita chicken.  I sautéed strips of chicken with onions and red and green bell peppers in olive oil with ground cumin, ground chili pepper, a little sea salt, and freshly ground black pepper.  I don’t have a formal recipe, because that’s pretty much it.  You can add the amount of each ingredient that looks good to you – I just eyeball it.  By the way, this is a super-easy meal to throw together and it was the primary recipe that I used for E’s pepper trial (without the added spices).  We ate it with forks, but you can also serve it on corn tortillas.  I was afraid that serving it that way would make people miss the cheese.

Mexican Cauliflower “Rice”

The first side dish was the Mexican Cauliflower “Rice”, that I posted a couple of weeks ago.  It’s a grain-free and flavor-intense version of an old family favorite.  I actually created the recipe for this meal but I am now making regularly.  An added perk to this one was that it was really easy to make ahead and then reheat in the oven right before serving.

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Black Bean Salad with Corn, Red Peppers, and Avocado in a Lime Cilantro Vinaigrette

Another side dish was a Black Bean Salad with Corn, Red Peppers, and Avocado in a Lime Cilantro Vinaigrette from Once Upon a Chef.   I can’t take any credit at all for this absolutely delicious salad.  The only change I made to the published recipe was that I used frozen corn kernels instead of taking them off the cob (because I’m lazy, not because corn on the cob isn’t safe).  We did trial the salad ahead of time because E really hadn’t had cilantro or lime before, but everything else was a known safe and the salad was a hit with E and our guests.  This salad was great for a party because the colors of the veggies made it a beautiful addition to the spread and it actually tastes better if you make it ahead of time.

This picture is from the Once Upon a Chef site.  

Corn Cake Mini Muffins

These corn cake muffins are one of my favorite recent finds!  I made it from a Chi-Chi’s mix.  A mix that doesn’t contain soy is so rare that I quadruple-checked it and then made my husband double-check it.  But it’s safe!  You add water, a can of creamed corn, and butter to the mix and viola – E’s new favorite food!  I used Green Giant Cream Style Sweet Corn, which is just water, corn, and cornstarch and substituted the butter for Soy-Free Earth Balance.  I’ve started keeping the mix and canned corn in the pantry so that I can whip up a safe treat for E at a moments notice.

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A safe mix and can of creamed corn! 

Birthday Cake

We ended the meal with a Vegan, Soy-Free Construction-Themed Birthday Cake with Chocolate-Peanut Butter “Dirt” that was awesome to look at, play with, and eat!

IMG_4469     Vegan, Soy-free Construction Cake

E’s second birthday party was a success!  Our guests seemed to really enjoy all of the food and I didn’t have to worry about anything falling on the floor where E might pick it up or anyone touching E with messy, unsafe hands.  It was a wonderful day and also a turning point for us because we learned that we really can make an entire meal that everyone, even E, can enjoy!   I couldn’t have been happier!

Have you successfully thrown an entirely FPIES-Friendly party?  What did you have on the menu?

 

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A Bittersweet “Last Time”

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A poem called “The Last Time” has shown up in my Facebook newsfeed several times over the past couple of weeks.  Have you seen it?  It’s one of those poems written to make parents weep. Seriously. It’s all about how your child will grow up and how there will be a last time for all of the things that you take for granted (wiping a dirty face, holding a hand to cross the street, etc.).  It’s actually quite beautiful and one of those reminders that we need as we struggle with the parental hassles that make up our daily to-do lists. If you need a good cry, you can read it here, but have your tissues ready.

I’ve been thinking about this poem a lot today as we are in the midst of a “last time.”  Today will likely be E’s last full day of Neocate Junior.  And quite frankly, I’m a little emotional about it.  (Jonathan, stop rolling your eyes.)

It never occurred to me that a baby formula would become such a part of our lives and now that we are on the cusp of moving on I don’t really know how to feel.

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Let me explain…

Before E was born I knew I wanted to breastfeed.  I had read all about the benefits of nursing and wanted to provide them for my son.  You know me, I read a bunch of books and articles and even dragged my wonderfully supportive husband to a Saturday morning workshop.  I was ready.  And apparently so was E.  He latched on immediately in the delivery room and I breathed a sigh of relief that nursing was going to work for us.

That was last time that feeding my infant was easy.

Somehow we started having problems with nursing and E lost a significant amount of weight in the hospital.  I could tell that it was serious because the attending pediatrician (who actually happened to be a neonatologist – the kind of doctor who has seen very sick newborns) wouldn’t discharge E until we had made an appointment to see his pediatrician the following day.   At that very first pediatrician appointment, the doctor told me that I had to start supplementing with formula to get his weight back up.  I had read that this was a bad idea and looking back I probably should have tried to nurse for a little longer, but I was scared.  Here I was sitting in the pediatrician’s office with this new tiny person who was completely reliant on ME.  A tiny person who wasn’t even supposed to be here for another two weeks!  I was exhausted and shell-shocked.  I felt like I didn’t know anything so I did what I was told.

And so that was the beginning of our formula story.  I’ve written about this before so I won’t bore you with the details of visits to lactation consultants and pediatricians and falling off of growth charts and trying various formulas to get my child to stop vomiting and start growing.

Shortly after E turned 4 months old we found ourselves sitting in an allergist’s office.  When we got to that appointment we were exhausted and bewildered.  We had this adorable baby who was finally growing but continued to spit up constantly.  He always seemed uncomfortable and didn’t sleep (so neither did we).  I remember the comforting relief as the allergist listened to us, validated our concerns, and agreed that something was wrong.  I remember the confusion when his scratch test was positive for milk and the fear and disbelief as we were trained on how to use an epipen.  And I remember the hope that I felt when we were presented with Neocate, a hypoallergenic amino acid formula.

I felt confident that Neocate was the answer.  This can of powder was going to nourish our son without poisoning him the way everything else had.

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Loving his cup of Neocate at about 9 months

Well, it took several weeks for the allergens to work their way out of E’s system and in the meantime we actually added more!  But eventually he started to thrive on Neocate.  As we learned more about his reactions, eliminated his allergens, and found out that he had FPIES, we started to feel more confident in our ability to safely nourish our little boy, thanks to Neocate.

When E turned one, as most families were switching over from formula or breast milk to whole milk, we switched from Neocate Infant to Neocate Junior.  His diet was still very limited and his nutritionist explained to us that while non-dairy milks have high levels of calcium, there was no substitute for the protein and fat in cow’s or soy milk.  So we continued to give E Neocate several times a day.  He looked forward to his “cups.”  In fact, when he was 16 months old and had a stomach bug we fed him only clear liquid for a day.  He practically jumped for joy when we gave him a “cup” of Neocate the next morning and he said “yum” for the first time 🙂  This formula has been his comfort food, the first food that didn’t make him sick and the stimulus that finally helped him to grow into the rambunctious boy that he is today.

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Ok, I may be romanticizing Neocate a little.  There were definitely some things about it that we didn’t love.  For the past two years, every morning (before coffee) we have to pull out the scale, and measure, scoop by scoop, the amount of powdered Neocate for the day.  This results in various degrees of powdery mess, depending on how tired we were or how (im)patient E was.  Then each night we had to hand-wash the container that we mixed it in so that it was ready to go for the next day.

Relying on Neocate, especially when it was E’s only form of nutrition, was sometimes stressful.  We always had to have enough of it with us.  You can’t just run into a grocery store and pick some up if you forget it.  We never left home with an “emergency cup,” enough powder to make one extra cup if something happened and we found ourselves needing it.  Oh, and it wasn’t cheap!  At one point E was going through about two cases every three weeks.  These two cases had a $255 price tag that we paid out-of-pocket for several months.  After much stress and fights with our insurance company, they finally agreed to cover it – but I’m pretty sure that we grew several gray hairs in the process.  Neocate wasn’t always easy or perfect, it has been our constant. And I really believe that it saved our little boy.

Yesterday, we returned to the allergist.  This appointment was so completely different from that first time.  Instead of carrying our thin, tired, spit-up soaked infant into the office like zombies; our chubby little boy in his clean button-down shirt led the way to the exam room.   The answer to the nurse’s “how is everybody doing?” was an enthusiastic “great!”  We didn’t have any reactions to report since our last visit in April.  We were continuing to successfully add fruits, vegetables, nuts, and fish to E’s diet.  We didn’t really have any concerns.

Everyone was pleased to see how well E was doing.  The kid sure knows how to work a room, too!  He had all of the staff ogling over him in minutes.  He had IgE skin tests for all of his allergens and they were all negative! And so the plan moving forward is to start to challenge the allergens that he’s been avoiding for over a year (more on that later).  Then the doctor said it – Neocate Junior is no longer necessary.  

E can now safely drink almond milk and cashew milk.  We are almost finished a hemp milk trial, too.  The doctor is confident that with his diverse diet and these milk-alternatives, he doesn’t need the Neocate.

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It’s definitely a relief.  It’s amazing that after two years, we are finally off of formula.  But I can’t help to be a little bit sad that it means my baby is growing up.  Sure, it’s been over a year since he has had a bottle, but something about the formula allowed him to stay my baby.  I guess I am feeling the same way all parents feel at all milestones, it’s exciting to watch our children conquer another new skill in life, but sad that we have to experience another last time.  I think I also feel kind of like my therapy clients feel at their final session.  Neocate has been like therapist to us.  It has guided us through some really tough times.  It helped us pick up the pieces when we were at our lowest point.  It gave E the nutrition that he needed to grow and the ability to branch out and try new foods.  It has been our support for so long.  But, as I always tell my clients, the goal of therapy is to provide them with what they need so that they can move forward on their own, without the need for a therapist.  And that is what Neocate has done for E  (and for me and Jonathan, too).

We still have some of our Neocate stash so I think we will slowly work it out of his diet over the next couple of days.  Honestly, this is probably more for me than it is for him.  As much as he loves his “cup” I think he’s just as happy when it has almond milk or hemp milk in it.  In fact, E can’t seem to get enough hemp milk! I can’t predict if he will miss his Neocate or not.  He only stared at me blankly when I tried to explain the significance of his last full day of Neocate.  I think I’ll miss it for now but someday I won’t even be able to remember why it felt sad to me to leave it behind.

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Of course, part of my baby growing up, also means that he is getting closer to outgrowing his allergies!  We were told from day 1 that he will likely outgrow the allergies by age 3 (though the current research isn’t as optimistic).  That is officially less than a year away now!  We have scheduled his hospital-based challenges for milk, rice, and oat in November and December.  It’s possible that by end of 2014 he will be able to safely eat these three foods that we have been avoiding for most of his life! I can’t even wrap my head around that.  I’m trying not to get my hopes up too high but as I made my last 22 ounce pitcher of Neocate this morning I couldn’t help to wonder if this is the beginning of our FPIES “last times.”  And the beginning of so many firsts!

 

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“Cheers!”
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2nd Birthday Construction Cake! (dairy free, egg free, soy free)

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At the end of August my baby boy turned 2! It’s funny how I can so vividly remember the day he was born like it was yesterday and at the same time it seems like he’s been a part of my life forever!

While I never officially got birthday party invitations to his grandparents, aunts, uncles, and cousins, I spent most of the summer planning his party, and his cake in particular.  I feel like the birthday cake is the centerpiece of any birthday celebration and refuse to let FPIES get in the way of my son having an awesome cake.  This year has been all about “cars,” which is the label E gives to any type of vehicle.  But really it’s trucks, especially big construction trucks, that excite him.  Inspired by a couple of construction themed cakes I found on Pinterest, I set out to make an awesomely “dirty” cake complete with bulldozers, diggers, and dump trucks.

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I think this is the best $6 I have ever spent!

However, I also wanted the cake to taste great.  Not just “great (for a vegan cake),” but just “GREAT”  This is hard. Not as hard as last year, when it had to be grain-free, but still pretty difficult.  So I started baking.  There are actually a bunch of vegan cake recipes out there but most of them are oil-based.  They are ok, but don’t really do much for me.  They taste different, more like a waffle than a yellow cake.   I like waffles but I wasn’t trying to make a birthday waffle – just a good old yellow birthday cake.

I was just about to start experimenting with a truly new recipe when like a sign from heaven, the Kindle version of The Food Allergy Mama’s Baking Book by Kelly Rudnicki was available for free download.  I downloaded and scrolled until I found a yellow cake recipe that was not oil-based – Jackpot!  Of course, nothing is really that easy.  The book offers great recipes for those with dairy, egg, and nut allergies.  And, like most vegan recipes, there is a pretty high reliance on soy products to replace dairy.  So it still required a little tweaking to make it safe for E.  But it was really good! Maybe not perfect, but much better than “good enough.”  And come on, this cake is free of milk, butter, soy, and eggs (as well as coconut, rice, oat, and shellfish)!  I promise I did not have to force anyone to eat it 🙂

The recipe below is only a slightly adapted version of the Food Allergy Mama’s recipe but it’s easier to have it in one place than to try to do the substitutions in your head.  It makes one 9 inch single-layer cake or 12 cupcakes, which is probably enough for most of the time.  You can double it for a double-layer cake or triple it for a half-sheet cake, which is what I did for the construction cake.  Just remember that the cooking times will change with the size of the cake (cupcakes will take about 20-25 minutes, the half-sheet took about 40 minutes), so keep an eye on it.

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Yellow Cake (dairy-free, egg-free, soy-free)

Ingredients

  • ½ cup dairy-free, soy-free margarine (I use Earth Balance Soy-Free)
  • 1 cup granulated sugar
  • 1 cup unsweetened original almond milk
  • 1 teaspoon vanilla extract
  • ½ cup unsweetened applesauce
  • 2 cups all-purpose flour (cake flour would likely be better but I usually have AP on hand so that’s what I used)
  • 2 teaspoons baking powder
  • ½ teaspoon salt

Directions

Preheat oven to 375°F

In the bowl of a stand mixer fitted with the paddle attachment, combine the margarine and sugar until light and fluffy.  This step is actually where your cake get’s the air bubbles that will allow it to rise (the baking powder just makes the bubbles bigger), so don’t be afraid to over-beat at this point.  In fact, while you have the mixer going, this is a great time to get your dry ingredients together.

In a separate medium bowl, combine the flour, baking powder, and salt with a wire whisk.

Slowly add the almond milk, vanilla, and applesauce to the margarine/sugar mixture and continue mixing until thoroughly combined.  Warning: the addition of the applesauce to the batter isn’t pretty.  The first time I did it I panicked, but once you add the dry ingredients it all smooths out – trust me.

Add the flour mixture to the wet ingredients and mix on low until combined (about a minute). Increase the speed to medium high and beat for an additional 1 to 2 minutes, until you have a nice, smooth mixture, scraping the sides of the bowl as needed.  Take care not to over-beat once you add the flour or the gluten will bind and it will get tough (replacing the AP flour with cake flour will help to prevent this as it has less gluten in it).

Coat one 9-inch cake pan or a 13×9-inch baking pan with dairy-free, soy-free margarine. Pour the batter into the prepared cake pan, and bake for 25 to 30 minutes, or until an inserted cake tester comes out clean. Cool completely before frosting.

Chocolate Frosting (dairy-free, soy-free)

I also used the recipe for Creamy Chocolate Frosting from The Food Allergy Mama’s Baking Book, again just substituting out the soy milk (see below).  This recipe makes about 2 cups.  I doubled it to cover the half-sheet cake but had some left over.

Ingredients

  • 1 cup dairy-free, soy-free margarine
  • ½ cup cocoa powder (check ingredients some contain dairy)
  • 2 tbsp almond milk
  • 1 teaspoon vanilla extract
  • 1/8 teaspoon salt
  • 2 cups confectioners’ sugar

Directions

In the bowl of a stand mixer fitted with the paddle attachment, cream together the margarine and cocoa powder until smooth.

Add the vanilla, and salt.  Mix thoroughly. Slowly add in the confectioners’ sugar, mixing on low for 1 minute. Slowly add the almond milk as needed to reach the correct consistency.  Increase the mixer speed to medium, and beat 4 to 6 minutes, until light and fluffy.

Chocolate Peanut Butter “Rocks” Topping

Finally, I used my recipe for Chocolate Peanut Butter Eggs for the topping.  Instead of shaping the peanut into egg-shapes I just spread it out on a parchment-covered cookie sheet before putting it in the freezer.  Then I poured and spread the melted chocolate right on top.  Super easy!  I made sure it was nice and hard (froze it overnight) and then used a good sharp knife and meat tenderizer to break it up into “rocks.”

Once you have all the parts, the cake is easy to put together.  I frosted the entire cake with chocolate frosting.  It’s so relaxing to frost a cake when you know that your goal is to make it look like dirt!  I cut out a “2” and laid it on the cake then piled on the “rocks.” The final touch were the trucks, placed so they look like they are working hard.

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I was so happy with the end result!  And E loved it too!  As soon as he saw it he wanted to play.  I managed to distract him with an extra backhoe until after we sang “Happy Birthday” and then let him have some fun before we cut it.  I must say – it tasted as good as it looked.  It’s so rich!  You would never know it was vegan and free of so many allergens!  It got rave reviews from the whole family!

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To complete the “road work” theme, my wonderful husband decorated the table, complete with orange “cones”

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It was a wonderful party, complete with an awesome centerpiece cake. I was really impressed by how well the cake looked and tasted.  And so was E!  He continues to play with the construction vehicles (he even takes them to bed!) and frequently goes to his high chair and says “happy,” his adorable way of requesting more (happy birthday) cake. I’ve got to say, he has made this mommy very happy!

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IMG_4483The digger even doubles as a spoon! You don’t want to waste any chocolate!

 

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Happy 4th of July!

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I hope everyone is having a wonderful and safe Independence Day!  After a very busy week we are enjoying a lot of family time this weekend.  We had a wonderful, though slightly wet, morning at our local parade.  E is very into any type of vehicle lately, the bigger the better, so he was in heaven watching dozens of fire trucks drive by him.

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E was also pretty thrilled by the toothbrush a local dentist was handing out.  The excitement of the toothbrush was more than enough to distract him from the candy that was being distributed by other groups 🙂

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We are home now and preparing to host a small picnic for our family tomorrow.  The ENTIRE menu will be safe for E: hotdogs and hamburgers on homemade (safe) buns, corn on the cob, tomato salad, and cupcakes for dessert. The preparations are underway and I am super-excited!  Hopefully the recipes will be winners and I’ll share some next week.  Here’s a sneak peek of the in-progress goodies:

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My wonderful husband is making homemade hotdog and hamburger buns

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We are very optimistic about our new cupcake recipe. 

What are your holiday plans? Are you attempting any new recipes?

Have a fun and safe holiday weekend!
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Hooray for a Successful Easter (and Peanut Butter Eggs)!

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This weekend was crazy-busy for us and I’m exhausted.  But every last detail was worthwhile! I am so excited and can’t wait to tell you about how well everything went!

This year we hosted Easter for the first time, which was an honor and a little stressful.  My great-aunt has hosted  an Easter open house for nearly 60 years but was unable to do it this year, so I offered to have her traditional party at our house.  This was great because it gave me some control over the menu and we had all of E’s toys which were great distractions from all the food (it also gave me a good reason to do some intense spring cleaning).  We stuck pretty much with the traditional menu – kielbasa, ham, potato salad, and pasta salad.  There were some allergens on the menu but we decided not to mess too much with tradition.  We felt confident that we would be able to keep E away from those foods and decided to make a special meal for him.  It turns out that he doesn’t really care if he’s eating what everyone else is eating, as long as he’s eating when everyone else is eating.  I tend to get caught up with making a safe version of the traditional holiday meal for E, which causes me more stress and then he may or may not even eat it.  Luckily my husband was able to step in and prevent me from embarking on crazy recipes or rushed food trials this time.  We decided to keep it simple and went with tried and true favorites.  After all, what toddler wouldn’t be thrilled with an Easter hot dog?  

However, as you may recall, I was determined that we were going to pass down some Easter traditions.  Last Easter E was only about 7 months old and we were still dealing with the end of chronic FPIES so we weren’t feeling up to dyeing eggs.  I was a little torn about it this year too.  I figured it could either way – he could totally love it or not be interested and make a huge mess.  And then there are the eggs – one of E’s allergens.  Dyeing eggs doesn’t really require eating the eggs, but the kid still puts everything in his mouth!  And what was I going to do with a bunch of hardboiled eggs? Eggs were fairly easy for us to eliminate from the house after we found out E was allergic – my husband and I never ate a ton of eggs so it wasn’t hard to just not have them.  I didn’t need to start now.  I wondered if I could find something else to dye, so I started scouring the internet.  I found a company that makes ceramic dyeable eggs, but they were a little expensive and I was afraid they were too fragile to give a one-year-old who doesn’t have a gentle bone in his body.

I was ready to give up when a friend and fellow FPIES mom told me about plastic dyeable eggs that Walmart was selling.  I was so excited – completely allergy-safe and rough-little-boy-friendly.  It’s like they were made for E!  I will generally go out of my way to avoid Walmart, but I’ll do anything for my son, so off to Walmart I went.

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We finally got around to dying the eggs on Saturday afternoon and it was a blast!  E loved it!  I also think I will seriously consider using plastic eggs forever.  He was able to throw the eggs into the dye cup, smash them down with egg holder, and drop them on the floor without having to worry about any broken eggshells.  And the eggs were beautiful!  The sentimentalist in me is also excited to save one of E’s first dyed Easter eggs.

IMG_2940Next up was the Easter candy.  So after a day of cleaning, egg dyeing, last minute Easter outfit shopping, and cooking, I started to make candy.  I was glad I had done a test run of the giant chocolate bunny and smaller chocolate candies that I made out of enjoy life chocolate chips.  That was easy.  But I also decided to make allergen-free peanut butter eggs based on a recipe I came across on Pinterest.  These were fairly easy, but a bit time consuming and I started around 10pm (which is past my bedtime, I know I’m pretty lame).

The results were totally worth it! The peanut butter eggs are delicious! Seriously.  Better than than Reese’s.  There’s about 5 ingredients in them – so they are pure yumminess!  But even better than the yum-factor is the safe-factor.  E can eat them and he loves them!  I love having a safe snack for him and watching him enjoy the indulgence.  It’s also nice that I can treat myself to one without hiding in the kitchen and going through an entire decontamination procedure afterward.

On Easter morning, the Easter Bunny left a basket that contained the safe chocolate bunny, a few smaller chocolates and two peanut butter eggs, along with a Curious George lunchbox, safe crayons, a new book, and a couple small toy cars.  E loves cars and Curious George, so I didn’t know which was going to be the bigger hit in the basket.  Turns out it was the peanut butter eggs!  He didn’t even hesitate – he grabbed one and took a bite as soon as he saw them! I thought my heart was going to burst with pride, love, and joy!  He was so excited and happy to see a candy that he could eat.  I loved that he loved them!

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He didn’t waste any time digging into the candy!

We set out some small chocolates and peanut butter eggs on the coffee table when our guests arrived.  Everyone raved about them.  I love finding things that are safe for E that other people can also enjoy.  It was also so exciting that E could walk up to the coffee table and indulge in a little treat.  I guess it’s a feeling only an allergy-parent can understand.  I spend so much of my time anxious about E being exposed to allergens and preventing him from eating things that other people take for granted.  Being able sit back and relax as I was watching him enjoy a safe treat was the best Easter gift I could imagine!

We had a wonderful Easter surrounded by family and sharing traditions with our little boy.    I hope you also had a wonderful and safe Easter! I know that it’s a bit late, but below is the adapted recipe for safe peanut butter eggs.  I will definitely be making these year-round (maybe as just balls or other shapes if I’m feeling really ambitious) and I hope you enjoy them too!

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In all of the craziness of this weekend I forgot to get a picture of just the peanut butter eggs.

Peanut-Butter Eggs: Dairy-Free, Soy-Free, Egg-Free, Grain-Free

Ingredients:

  • 1 cup Peanut Butter (I used Crazy Richard’s 100% Natural Creamy Peanut Butter – I’d assume you could use any safe nut/seed butter)
  • 1/4 cup Soy-Free Earth Balance Natural Buttery Spread
  • 1 tsp Vanilla
  • 1 1/2 cup Powdered Sugar
  • 10 oz package Enjoy Life Mini Chips
  • 1 tbsp canola oil (or other safe oil)

Directions:

  1. Melt peanut butter and Earth Balance for 1 minute in microwave.
  2. Stir until blended.
  3. Add vanilla and powdered sugar and mix well.
  4. Scoop out about a tablespoon of the mixture and shape into an egg shape.
  5. Place on parchment paper lined sheet and place in freezer for 15 minutes.
  6. Mix the mini chips with canola oil.
  7. Melt the mini chips in microwave by heating for 30 seconds then stirring and repeating process until it is melted and smooth. (This should take about 1 1/2 minutes)
  8. Using a fork, dip egg into chocolate and flip to cover completely. Lift with fork and gently tap on edge of the bowl allowing excess chocolate to drip off.
  9. Place back on parchment paper.
  10. Refrigerate 10 minutes until chocolate has set

If you have the freezer space, I recommend freezing in two batches. This will allow you to get started with the freezing process while you shape the remainder.  It will also keep half frozen while you are dipping the other half in chocolate, which is easier to do when they are more solid.

The original recipe is here: http://www.raininghotcoupons.com/chocolate-covered-peanut-butter-eggs/.  I removed the allergens and also made them much smaller.  
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Our beautiful dyed plastic eggs! 
Happy Easter!
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Keep It Simple, Supermom!

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There is NOTHING simple about FPIES.  It is difficult to diagnose, difficult to understand, difficult to manage, difficult to explain, and very difficult to live with.  When your child has FPIES everything becomes more complicated.  Having dinner at a relative’s house means preparing a meal (as well as snacks and dessert) that travels well that you are pretty sure your toddler will eat with minimal intervention from you.  It means spending a holiday running interference between your child and the appetizers.  It means stressing about finding a shampoo that won’t be harmful.  It means spending who-knows-how-long on hold waiting for a customer service representative to confirm that “natural and artificial flavors” aren’t code words for allergens.  It means always being on the lookout for other toddlers who might try to share their goldfish crackers with your son.  It means being on trash patrol wherever you go so that your curious child doesn’t pick up (and God-forbid put in his mouth) a discarded candy wrapper or dropped Cheerio.  It means avoiding untested foods and going through crazy food trials before you can comfortably feed something to your child.  I could keep going, but you get the picture.  FPIES turns your world upside-down and adds a couple of extra layers of work to the easy, walk in the park that is raising a toddler.

But we rise to the challenge.  We are ready.  We are super-parents, ready to don our capes and do whatever it takes to keep our children safe and their lives as normal as possible.  That being said, sometimes we get ahead of ourselves. Sometimes we are so prepared for the extra layers of difficulty that we factor them in when it isn’t necessary.   We anticipate unlikely problems or create improbable scenarios.  Sometimes the crazy takes over and we make things more difficult then they have to be.

I’m often grateful that my husband, who is incredibly involved in E’s care and supportive of all that I do, is removed from E’s minute to minute care just enough to be objective.  It is his job to tell me when I’m being crazy.  He’s the one that reminds me that we aren’t leaving the planet for a dinner party and that our hosts will probably have a refrigerator to store E’s safe food.  He’s the one who reminds me that E already has a safe chocolate and convinces me to turn that into Easter candy.  He’s the one who reminds me that while a short nap is annoying, it is not the sign of an impending reaction.  He’s my crazy-meter and is usually pretty good at sounding a warning bell when I’m approaching a full-on crazy attack.

By the way, he’s also the one that reminds me that I have more resources than I realize, that I am capable of  supermom status, and that I can handle all of the challenges that FPIES brings.  

Unfortunately we recently had a situation where my crazy-alarm malfunctioned.  I think it started when my husband was forced to spend a day in my cape.  Right after Christmas E was recovering from an ear-infection and had to see his pediatrician on the same day that we had previously scheduled a dietician appointment.  It was incredibly bad timing that I woke up that morning with an awful stomach bug, the kind that prevents you from leaving the bathroom, let alone the house.  Jonathan was on his own.  He seemed to take it all in stride but I know how stressful one doctor appointment can be, let alone two in the same day. The dietician was especially challenging because I am generally in charge of preparing E’s foods and it’s hard to have a useful adult conversation while a toddler explores a new office.

One of Jonathan’s take-aways from the dietician appointment was that E needed more calcium in his diet and that we could accomplish this by feeding him salmon-potato patties made with canned salmon.  It took us a couple of months to get around to the salmon trial but when we did, super-dad was in charge of making the salmon into patties to feed our son.  Jonathan woke up one Saturday morning and reported to the kitchen where he started grinding chia seed, flaking salmon, chopping garlic, and who knows what else. It wasn’t a difficult recipe but it was somewhat time-consuming and in the end E was not a fan.  I used every supermom power I could think of to get him to eat.  We were way past generic airplanes of food flying into the hangar.  I was acting out scenes from Dinosaur Train and Curious George (and a little bit wishing that we allowed him to watch more TV so I had a larger repertoire).  I was singing, dancing, using bad accents, and generally making a fool of myself.  It was exhausting and my audience was not appreciative.  I had even resorted to bribing E with other foods.  If he took a bite of the salmon patty, he was rewarded with a bite of avocado (I don’t know where this kid came from but he’d take avocado over chocolate any day!).  After a couple of days of forcing my son to eat food so that I would know it was safe (but never feed it to him again) I was ready to give up on salmon all together.

But it was still important to me to know that a fish was safe.  This would open the door to other fish and answer a question that the allergist was sure to ask at our next appointment.  So we went back to the drawing board and decided to change our approach.  While the canned salmon was best for calcium intake (because it contains skin and bones – yuck), maybe it was as unappetizing to E as it was to me and we should just try another recipe.  I bought a frozen salmon filet and Jonathan consulted with some friends to develop a lovely, safe poached salmon recipe.  So he spent another Saturday morning stinking up our house lovingly creating a gourmet meal for our toddler.   Luckily our son is generally open to trying new food and readily ate about two bites before he decided he was finished.

poached salmonChecking out the poached salmon. 

Maybe he really hated salmon, or maybe he decided he liked his new mealtime entertainment.  Either way, I was not interested in another week of theatrics and fighting with him to eat a food that wasn’t going to become a regular menu option.  I was just about ready to give up on the salmon all together when I remembered the KISS principle. KISS stands for Keep It Simple, Stupid.  It’s a reminder to stick with the basics and not make things more complicated than they have to be. Hmm.  Were salmon patties and poached salmon for a one year old unnecessary complexities? I’m not sure why I didn’t see it sooner.  Typically I try to conduct food trials with the purest form of the food possible – keep it simple.  I decided to harness the power of the avocado and simply mixed the canned salmon with avocado, mashing them together like a salad.

Magically, he ate it! More accurately – he shoveled the salad into his mouth as though at any minutes I might take it away from him! I couldn’t believe it!  The rest of the salmon trial was a pleasure.  Most importantly there were no reactions! All this was to say that salmon was a pass! And now I have a SIMPLE new recipe that I can use to increase E’s protein and calcium intake.

photo

Shoveling the Salmon/Avocado Salad into his face.

I know that I have a tendency to make things more complicated than they have to be.  While my husband is usually an awesome crazy-meter and can stop me in my tracks, he travels and sometimes he gets wrapped up in the complexity of our lives too.  So, my new mantra is going to be KISS – Keep it Simple Supermom!  I believe that mantras should be positive and I’m not making things complicated because I’m stupid, I’m making them complicated because my supermom cape prevents me from seeing the simple solution 🙂

We are about to start our crab trial – I bet you can’t guess the recipe we are using…

1

Table for Two & a Highchair

restaurant

It’s been a rough couple of days at our house.  We were in the middle of a salmon trial and it turns out E likes fish about as much as I do.  Getting him to eat the salmon required all of my energy in addition to several pathetic renditions of all of the Dinosaur Train songs.  Eventually even yelling “time tunnel, time tunnel approaching,” was not enough to get him to open his mouth.  I was so focused on the fact that he wasn’t eating the salmon to notice that he really wasn’t eating much of anything, which for E only means one thing – he’s getting sick.  Sure enough, by Sunday he had a full-blown cold – stuffy, runny nose, cough, and incredibly high level of irritability. His coughing wakes him up so naps are short and nighttime sleep is fragmented.  It seems that everything little thing sends him into a meltdown.  And my husband is traveling for work.

I was at the end of my rope by the time bedtime crawled around Monday night and feeling pretty sorry for myself.  I could write an entire post about all of the things that seem to be going wrong lately, but no one wants to read that.  Instead, I decided to put the salmon trial on hold, give my sick little pumpkin lots of cuddles, and brag about a huge accomplishment we had this weekend.

First let me give you some context.  Jonathan and I love restaurants.  Prior to E’s arrival we ate out way too often.  Like, we knew the wait staff at several restaurants in Tampa.  Of course we figured we’d have more “home-cooked” meals after E was born (does frozen pizza count as home-cooked?), but I think we always assumed that we would raise our children to know how to behave in and enjoy restaurants.  Well, that isn’t really the way it worked out for us.

Because of E’s allergies, we generally don’t even eat together as a family when we are home.  It’s just easier for us to focus on feeding him his safe food and then Jonathan and I eat once he’s in bed (lunch at nap time and dinner after bedtime).  This way we can still eat our dairy-laden favorites (not that we should eat all that cheese) without worrying about cross-contamination or him wanting something from our plates.  When we do eat together at home we do our best to have a completely E-safe meal so that we can relax and enjoy, otherwise it’s too stressful and we end up not really tasting our food.

As your can imagine, restaurants are like a ticking time bomb. There are so many chances for him to be exposed to an allergen.  From shmutz on the highchair to him finding a crumb on the table, to him sneaking something from our plate, or us (or worse – a waiter) touching him with a possibly-contaminated hand.   And then there’s the fact that we don’t trust anyone else to prepare or handle his food.  Seriously, do you believe that a restaurant can cook something that in no way comes in contact with butter?  And let’s be honest, if butter isn’t that important to the chef, I probably don’t want to eat there 🙂  So we have to bring all of the food that E will eat.  That means packing a large amount of food so that we have enough to keep him happy for the entire time we are there.  This also requires having a repertoire of safe food that travel well, which wasn’t always possible.  Dining out is so stressful that it generally isn’t worth it.

But mommy was craving a fried onion and steak with a horseradish crust, so we made the leap.  We didn’t call ahead and had a short wait. We momentarily panicked because we were afraid E would want to spend that time walking around, exploring, and touching who knows what.   But we forgot what a novelty this experience was for  him – he was totally overwhelmed by all of the people and new things to look at and was content to sit in our laps,  checking out his surroundings and pretending the pager was telephone while we waited.  Once we were shown to our table, we were like a swat team wiping the down the highchair and table.  We tried to be discreet but I’m sure we looked like crazy germophobes.  Oh well.  After attaining a sufficient level of cleanliness we put down a placemat, so he couldn’t touch the table anyway, and plopped him in the highchair.

E loved the experience of being around so many people!   We opted not let him use the crayons that came with the children’s menu because we couldn’t be sure of what was in them and have to assume that everything will end up in his mouth, but I came with a bag of toys and only needed a couple to keep him busy.  He did a great job drinking water like a big boy from the kiddie cup, which he thought was swell and kept him more entertained than his toys.  He also tried to make friends with small children nearby and did more than his fair share of flirting with an elderly woman at the next table.  He was in his glory!

Because this trip was spur of the moment, I didn’t have any tried and true safe snack food on hand.  I did have a bag of Veggie Straws in the pantry that I had been planning to try when we had the time.  They (theoretically) don’t contain any allergens and he had most of the ingredients before but he had never had this particular product.  I decided to be brave and give them to him anyway to keep him happy while we had our appetizer.  It was a little unnerving, but he loved them and hasn’t shown any sign of a reaction.  When our dinner arrived we gave him a peanut butter and jelly sandwich – when pb&j became safe our whole lives got so much easier!  Jonathan and I each did our best to eat with only one hand (and silverware) and we had a baby wipe at the ready for the a quick and easy sanitization if we needed to intervene with E in any way.  But he was great and independent and we all ate together without incident! It was truly wonderful.

I know, it makes me a little sad that a dinner in a loud chain restaurant at 5:00 on a Saturday night was the highlight of my weekend, but it was such an accomplishment for us! It feels great to know that maybe we can do this again and have some semblance of our “normal” back.  I’m also hoping it gets me off the hook for preparing dinner every night 🙂