Thursday, June 28, 2012

A Mama Top 10

Just a quick one-- here is my top ten list of recipes and foods that I am loving during my current elim diet. Hope I can help to share some info with those of you looking for new tasty options!

10. My new protein bars/pseudo cookies
9. Bridget's classic cornbread
8. Earth's Balance Coconut Spread
7. Homemade chocolate candy made in silicone molds---pop out a piece and go!
6. Sunflower seed butter and banana slices
5. Honey Kix-- my fortified snack food!
4. Safe Quinoa! I eat it with salmon and it is part of the bread recipe below!
3. New sandwich bread without the almonds of course! This is a great recipe blog-- please check it out!
2. Happy Heart Pancakes--- add chocolate chips (Enjoy Life of course!) or fruit to the mix for a truly delicious pancake!
1. English muffins Ok, so I don't follow her recipe fully--- I use completely different flours and I ditch the xanthan gum, but this is a great recipe to play with using your own or your child's own safe foods. They actually taste like english muffins!!! I used a combo of sorghum, quinoa and arrowroot instead of the suggested flours. This is also a great blog with recipes to check out and I love the title of her blog! And since you can't have english muffins without jam, I love the plain strawberry preserves from For the Love of June. These ladies are so awesome that my littlest girl has her middle name taken from one of these lovely ladies!

Hopefully there will be more at a later date, but until then, enjoy!

Tuesday, June 26, 2012

Elimination Diet Update and a Powerful New Recipe

Well, I have re-emerged from the puke and poop to post an update! I am happy to report that I *think* (watch me curse myself) that I have managed to control the more severe of C's reactions to my milk. Projectile poop as of two days ago has stopped, multiple puking moments have been curtailed, and her spit up has even decreased a little (added bonus!). She is also having more moments of being engaging, rather than being more despondent (within the realm of normal newborn of course!). We are still dealing with a lot of the silent reflux and can't seem to get that under control with diet changes and lifestyle changes (positioning, etc), so I am hoping we can figure that out a bit better soon.

My diet is the same as B's right now, without potatoes/mango, with salmon, green beans and the occasional red peppers (weird right?!). I have so very much respect for all of those TED mamas out there-- it is tricky being limited for sure! But at least I have some options, albeit tricky and needing to be homemade ones.

So today, in the wake of B's latest formula fail and our constant hunt for protein in her diet, I decided to yet again read labels and create something yummy that we could both eat daily that might help boost our collective protein intake (I have always been at my best on a low protein, high carb diet, so I kind of struggle with protein as well). This is super easy and dangerously tasty. I think it would be even better with melted chocolate on top, but hey-- that is me! I kind of think EVERYTHING is better with melted chocolate on top, but really, don't you all agree?

5 Ingredient (plus baking chemicals) Protein Power Granola Bars
1/3 cup quinoa flakes
1-2 Tbsp sorghum/millet/other flour (I used sorghum to get the protein amount)
2 Tbsp sunflower seed butter
1 Tbsp honey
1 tsp baking powder (soda would be fine here too)
1/2 Tbsp coconut milk
pinch of salt
dash of vanilla (opt)

Preheat the oven to 350 degrees F. In a small bowl, mix all dry ingredients. Then blend in sunflower seed butter, honey, coconut milk and vanilla with a fork. Once well blended, press mixture into a prepared, greased glass dish. It should cover a 4x4 area, roughly, making four 1x4 granola bars. Bake for 12 minutes until edges are brown. Remove from pan and cool on wire rack. Slice when cool with a very sharp knife and enjoy!!! This entire recipe contains 10-12 grams of protein (with the sorghum version), according to the labels.

Thursday, June 7, 2012

The Preschool Snack Pack

My baby B that you have all grown to know and love since she was a mere 10 months or so old is going to be a big preschool girl in the fall. My goodness, how the time has flown! We are so thrilled to have found a great preschool to send her to-- a Montessori school, my personal favorite in the realm of early childhood teaching methods! On top of the Montessori structure being a great match for my little explorer, they are also knowledgeable about food allergies and very willing to work with us to help B to have fun, educational, SAFE days!

The preschool provides snack for all of the small ones, but we are permitted to bring B's from home due to her restrictions. If you haven't been keeping track, she is top 8 free, FPIES common trigger free, vegan, free of several fruits and many more veggies, and also reacts to a handful of other things, such as cinnamon and latex (latex does not produce an FPIES response for her, of course). All in all, she has about 32 known trigger foods and about 19 safe foods/baking ingredients (like honey, etc). So if you have a little one in day care, preschool, etc with a lot of restrictions as well, it is my hope that maybe by us sharing our ideas for B's preschool snack packs, then perhaps you will also be able to use some of these ideas for your own little explorers. This will be yet another category on the blog-- so many subheadings!-- but I think it will be a very worthwhile one! I hope you enjoy!

To kick things off, here is a top ten list of snack pack ideas from some favorite websites and blogs!

Preschooler B's Top 10 Snack Pack Ideas for Preschool
1. Butterfly snack bags My MIL sent this link to me and I absolutely love this idea! It isn't a snack itself, but an awesome and fun way to package a snack for lunch boxes, snack packs, or party favors. Thanks, Gram, for the great idea!

2. Crackers  This is a great recipe for crackers-- you can mix and match a nice combination of flours/starches/seeds-- it is extremely versatile. The version I make for B uses quinoa flakes, sorghum flour, millet flour and arrowroot starch (and I also throw in a few tablespoons of honey--- a recipe can always use more honey, haha). She loves the crackers cut into shapes (I use bento box cookie cutters that I bought in Japan at the 100yen stores since they are small) and then made into sandwiches with sunflower seed butter inside.

3. Bento Boxes: Sometimes it is all about the packaging! I will be sewing a little snack pack bag for B when preschool starts, and in that bag, one of the many bentos that we bought in Japan will be filled with her treats.

4. Granola Bars: We have a few recipes on this blog for these-- fruit bars, sweet bars, protein-packed squares. What I love most about these, is they are very easy to grab and go--- you don't even have to defrost them before tossing them in the bag to go out and about. Perfect for preschoolers!

5. Fruit Salad and granola: Any combo of fruit is great, but I find that berries hold up a bit better than some other fruits. Pair a berry salad with a few tablespoons of sweet quinoa granola and you have a healthy and sweet snack to give those tiny feet extra energy to run around!

6. Yogurt Parfait: A variation of number 5, simply layer homemade coconut yogurt (I use a variation of this recipe), quinoa granola (see above), and fruit of choice. I prefer glass jars that I found on amazon, but these look like some great plastic jars. And of course, include a fun spoon/utensils!

7. Fruit Slices and Sunflower Seed Butter: This requires a bit of help from the preschool staff, as you don't want the slices to get brown and yucky before eating (If your LO is safe with lemon, you can always use lemon juice to preserve the color of sliced apples and pears. B reacts pretty severely to lemon, so not an option for her). We will send a pear, utensils needed to peel and slice it, and a little cup of sunflower seed butter (bento box to the rescue once more!).

8. Muffins and scones: There is a large assortment of these on this blog! And a nice addition in a snack pack with one of these baked goods is a tiny cup of sunflower seed butter, coconut manna (softened), maple syrup or honey.

9. Fruity Friends: Using colorful plastic lollipop sticks (you can find these at your local craft or baking store), skewer bite size chunks of fruits together. Depending on the fruit and on how industrious you are feeling, you can use fun cookie cutters to make the fruits into fun themed shapes. I like a combo of pineapple, raspberries, strawberries, blackberries, and mango. Again, dipping sauce is always fun! I like a softened coconut manna or honey for this variety! In choosing fruit, keep in mind fruits that will retain their shape and color well, like berries, melons, some citrus, ans so on.

10. Jello Fruit Salad: If gelatin is safe, I really don't need to explain this one for you! Simply make the jello of your choice and stir a selection of fruit into the liquid before it gels. For those of you like us needing to avoiding gelatin, you can make this treat too, just with a bit of extra effort using agar agar. Simply select a fruit juice that is safe (we like Ceres brand mango juice) and cook in a saucepan with agar agar flakes on the stove top. You will need to make the juice pretty darn hot in order to break down the flakes but once the flakes have dissolved, you can pour the liquid into bowls/tupperware type cups (that can have lids). You will want the fruit to be already in the bowls before pouring in the liquid-- agar agar starts to set up rather quickly. Cover the bowls and refrigerate until ready to go! I like the ziploc brand 1/2cup lidded plastic containers. Perfect size for these kiddos! For instructions on navigating agar agar use, check out PETA's site.

Enjoy and please feel free to share your own favorites! We will be adding new ones throughout the fall!

The Long Road

We are on the verge of starting our first "post-baby" food trial for B--- Elecare Jr. unflavored. We start on Tuesday and this is the last stop for elementals for B. If this is a bust, then we move ahead to the amino packets and creating a formula. In thinking about all that comes along with food trials, I found this old post that I never published from B's third bday. Just a quick note though before you read on--- for all of you starting this journey, please know that most little ones DO outgrow their triggers/reactions and there are lots of reasons to hope. This is just my personal reflection on B's specific situation:

Well, we have seen the third birthday. And the day came and went. It was a great day--- hands on museum, Wendy's plain baked potato (and they put it in a kid's meal bag WITH a kid's meal prize. B's first ever and she was so impressed!), frog shaped cake and only one dose of benadryl (pretty sure the culprit was the hands on museum). But B has FPIES and the third birthday, as the other FPIES parents know, is the biggie, the one you wait for. The time when you are supposed to hit a fork in the road, when the fog is supposed to clear.

The change did not come, not for my B. As of a few days ago, the reaction to another elemental was confirmed. I know we could be much worse off and I am truly so grateful that we aren't. This doesn't stop me from being discouraged and to be honest, from being a little scared. I have always felt like I had a plan in the back of my mind. A way that might help things, a new idea that might work. To be honest, I am out of ideas. I don't know why she keeps reacting to anything new. I don't know why trace amounts of certain foods can just send her spiraling out of control. I love reading all of the success stories and am so happy for the friends we have met along the way being able to move on. I just hate feeling like my B is being left behind. We are still here, still in the thick of things, well over two and a half years post diagnosis. I know it sounds selfish, but when is it going to be B's turn? When does she get to move on? Hasn't she seen/felt enough?

N and I were commenting tonight on how clear a fail is once the food/drink has been pulled and how muddy it seems before hand (in the absence of a full blown FPIES reaction-- we were talking about chronic reactions). It isn't until you take the trigger away until you can see how clearly it has disrupted so much. Since pulling the formula, B has been EATING. (And she was only getting 4oz of formula a day). I have never seen her eat this much in her entire life (outside of nursing). She is asking for food, for good food (not just the typical 3year old asking for smarties). She is engaged, she is happy. Yes, she is still the lovely spirited and strong-willed child that I know and love, so we are seeing "normal" tantrums, challenges, etc. but over the last few days they have been NORMAL. She is sleeping without screaming those awful screams in her sleep. She is not doubled over in pain. I am not changing sheets and her mattress pad daily from diarrhea blowouts that go up her back and down her legs. And she isn't throwing up in her mouth throughout the day.

I must say that I will be a sad mama once the formula hiatus ends.

Saturday, June 2, 2012

Chasing Zebras

Well as I am sure many of you know or have guessed, we have now welcomed our newest little addition into our home. Another little girl! My poor husband-- he is so outnumbered. At least he is surrounded by beautiful women, right?!

B is the best big sister you will ever hope to meet (though I am quite biased). She loves kissing Baby C's little toes and even helps with her baths. As a true FPIES kiddo, she is very concerned with C's poops-- haha-- though I promise you, other than our dairy debacle, the poops are fine!

This brings me to my point of this post-- chasing zebras. How do we as parents turn off that setting? When your child has been diagnosed with a rare illness and even more so, a rare degree of severity of that illness, how do you become accustomed to not looking for zebras, not looking for a rare illness to rear its ugly head once more in other children down the line?

I have been struggling with this for most of C's pregnancy and now her early infancy. Trying to walk the line between determining what is "age and stage" vs. "not all that normal." We have discovered that there is certainly something going on with C and her response to foods in my milk. I am eliminating the following at this time: dairy, soy, rice, barley, oats, white potatoes, sweet potatoes, avocado, all beans and tomatoes (though will reintroduce to see-- these are questionable), eggs, all meat (simply due to being vegetarian), peanuts, tree nuts, all squash. It honestly isn't that bad, it is just complicated. She is still struggling with reflux-- silent and "not so silent"-- but I am trying to stick to eliminating everything that is causing outright vomiting right now, and then if we can get her to be stable for a little bit, then I will work on refining my diet a bit more if I can. I am also hoping that some of these foods clear my system in another week or two and maybe some things will resolve independently of me needing to cut more out of my diet.

But the reward is that C has calmer days, less crying than B ever did, and other than responses to a few of the foods that I have since eliminated, limited lower GI responses aside from extreme gassiness. I do feel like we are more in control of the situation and I do feel that for us, starting the elim diet before giving birth did help a lot in this process.

As we move through this, even though we are identifying things that certainly do not seem normal for "age and stage," I am trying to be conscientious of not jumping to FPIES with every hiccup, every blowout (even blowouts can be normal of course!), and every fussy night. I want so badly for C to breeze through her infancy, to have a relatively normal experience with doctors, food, growth, and so forth. I do however understand that as we trying to not jump to conclusions, having survived B's infancy certainly gave us tools that are priceless in helping us begin to navigate C's early days.

So for us I suppose, the answer is to acknowledge the possibility of zebras, to remember the tools and lessons that we have learned, but to remind ourselves to breathe in between all of this. To leave space for simply "age and stage," to hope for normalcy. And in the meantime, I will sit back and enjoy B learning how to love her little sister, enjoy those moments of infancy that we didn't get with B because of not knowing how to control some of the early symptoms that she had, and thank heavens for the fact that despite losing my beloved baked potatoes, neither one of my kiddos seems to have issues with pure cocoa. That is what I call the fates throwing us a bone. And on that note, I am off to find some ice water and enjoy life chocolate chips.