We named her Genevieve. We call her Ginny, G, Little G... and sometimes even Goob. She has FPIES - Food Protein Induced Entercolitis Syndrome. The road to a diagnosis was tough, and we have an even longer road ahead of us as we figure out just what we can safely feed her, and work to keep her growing healthy and strong. I'm blogging to keep family and friends up to date as we learn more everyday - and just maybe our story will help other parents as they journey and struggle with FPIES too.
Wednesday, October 20, 2010
Quinoa, Carrots and Goob. Oh My!
Wow, it's been awhile. At first, I was all "bloggety blog blog blog" and now... I wonder, "Where did the time go and how did I not get to the blog AGAIN today?" Finally, here I am; ready to ramble and update you with the latest and greatest on the Goob.
First and foremost, I would like to announce that quinoa was officially declared a pass. If you read the previous post you can see a comment from Amanda, another FPIES mom. She is an FPIES food genius and suggested adding a bit of brown sugar to the quinoa flakes. I did this AND ground up the flakes a bit more in the food processor. (I bought organic brown sugar that has no additives and, since it's just sugar, we didn't have a protein concern so didn't have to make this a seperate food trial.) The result? Ginny could not get enough. Could. Not. Get. Enough. I fed the flakes to her this way on the morning of 10/4. She ate and ate and ate and screamed when it was all gone. I fed her quinoa. Ellie fed her quinoa. I was so excited to find a way to simply get it in her - and even more excited to see her excited about food - that I did a happy dance. Ellie joined in my happy dance with her usual gusto. G thought our happy dance was hysterical and her laughter made the celebration complete. So, quinoa is safe and just typing this makes me grin from ear to ear all over again. It's become a staple food for us, comprising one full meal a day for G. Quinoa. Yummmm. I love you.
Once we added quinoa to our safe list (along with pears, spinach and apples), I decided that we needed another vegetable. I wanted something that would have more volume (if that makes sense) than the spinach, but also something that was a more common pass for FPIES kids. The answer? Carrots. It's important to note here that I HATE carrots. I don't really like to use the word hate. It's pretty severe. That being said, I HATE carrots. To me, carrots, pumpkin, all orange and yellow varieties of squash and sweet potatoes all taste the same - and that taste is just not good. For my G, however, I was willing to subject myself to the peeling, cutting and cooking of carrots. I did it for Ellie too. Kinda makes me gag just to think about the smell but, I did it (along with some help from John). The result for carrots? I tried to start slow. I meant to start slow. After a few days of G screaming for more after I finished giving her just a bite or two, I caved. Carrots are a pass too. We now have five safe foods. Five consecutive safe foods. I've said it before and I'll say it again. All of the success we've had is due to the trials of FPIES kids before us. It is the shared knowledge about food families and 'common' safe foods that has kept us out of the ER. We are so blessed.
I was flying high on the success of quinoa and carrots as I sashayed into Whole Foods and purchased amaranth flour. It's in the same food family as spinach and quinoa (and tumbleweed?) so I had decided to make this our next food trial. My intent was to use it to bake for G for the first time. A baked good. Hooray! More texture. More variety. A way to make her something cake-like for her birthday. My intent was to use amaranth flour to bake for G, so when I opened the bag and smelled the awful amaranth aroma, I was not deterred. I followed a much lauded recipe of the aforementioned Amanda-FPIES-mom-and-FPIES-baking-genius substituting my newly purchased flour in place of quinoa flour and... I like to bake. I am a good baker. The smells that flow from my kitchen tempt not only my husband, but ALL of the neighbors in our building. I am a good baker. The amaranth muffins were disgusting. The texture was disgusting. The smell was disgusting. The consistency was just wrong. The flavor was indescribable and disturbingly difficult to remove from my tongue. I tried to warn John, however, jaded by his confidence in my usual baking skill, he wasn't deterred. He took a big bite (of a mini muffin, but still...) and I wish I had a camera to capture the look on his face. I would post that picture here and you would laugh. So now, the amaranth flour sits quietly in my cupboard awaiting a day when I feel brave enough to try it again.
After that, I lost my momentum. I'm enjoying simply feeding G each day. A typical day might include apples and pears for breakfast, quinoa for lunch, and a dinner of carrots, spinach and apples. The girl eats a lot. She is sleeping in longer stretches too. She is not in pain and she looks very healthy so I'm not in a hurry. John has convinced me to drop my plan to trial corn, so we'll continue to avoid all 'true' grains, dairy, soy, legumes and poultry until she's at least 2, if not 4. I still intend to trial lamb soon-ish. Pit fruits are commonly safe (especially mango), so those are an option. I think we'll need some more veggies eventually so I'll have to do some research on that. I'm intending to trial bananas next (how many times has my plan changed?!) but need to get up the nerve to do it. It's not one of the safest, however, if bananas are a pass, avocado would more likely be safe too (since they're closely related). I'd love to have bananas to use as an easy egg substitute for baking and avocado for the healthy fat factor.
Soon enough, I hope to meet with a nutritionist or dietitian to double check that I'm meeting all of G's nutritional needs. Soon enough, I'll set a date to begin the banana trial. Soon enough I'll get my momentum back but for now, I'm enjoying the regular, every day milestones. G is babbling up a storm and says things that sound suspiciously similar to doggy (daw-eeeeeeeee), mama(meh meh meh), daddy (dad-deeee) and Ellie (Elj-yeeee) and walking walking walking. Soon enough, we'll get back to challenging FPIES and we'll put on our game faces, grit our teeth, pick up the spoon and march forward. For now, I'm going to enjoy the memory of our day at the apple orchard where, without fear, I was able to share a snack with my daughter - a fresh apple, right off the tree. She gnawed and slobbered and demanded more more more and she could have it. Soon enough, we'll re-pack our just-in-case-we-head-to-the-ER bag. Maybe next week. Not today. Not tomorrow either.
Subscribe to:
Post Comments (Atom)
I'm glad things are going so well for you!
ReplyDeleteI'm hoping to get on board of really starting to trial again now that the scope results came in.
COrn and bananas are staples in our house - I was shocked at how many options there are with those two foods!
Can I just say first that i love you! You are so funny and I really enjoy reading your style of writing. I too am an FPIES mom. Just like you, I have two daughters (the oldest 4 has food allergies to peanuts and eggs and my 21 month old baby Lyla is the FPIES gal of the house). I love your blog because reading it is like having someone dive into my brain and type transcripts of my daily thoughts. Banana's are the key to survival at our house, but you are giving me the confidence to finally trial quinoa! I am even feeling like trying to feed Lyla millet and I had never even considered it before reading your bird food post. Thank you and by the way, you are hilarious!
ReplyDeletedaveandthejensengirls.blogspot.com