I tripped over FPIES and I fell UP!!!!

Falling Up
by Shel Silverstein
I tripped on my shoelace
And I fell up--
Up to the roof tops,
Up over the town,
Up past the tree tops,
Up over the mountains,
Up where the colors
Blend into the sounds.
But it got me so dizzy
When I looked around,
I got sick to my stomach
And I threw down.

I love this poem and I think it describes the roller-coaster ride my daughter Samaya and our whole family embarked on when faced with Food Protein- Induced Enterocolitis Syndrome (FPIES).  It is overwhelming.  It has been a constant up and down of successes and failures.

In the beginning, I had no idea what was happening with our daughter.  I didn't know why she had diarrhea all the time or why she vomited certain foods.  Then I found the FPIES community on BBC and I knew what was happening.  We got a diagnosis.  I was terrified of what the future would hold and if we would find safe food for Samaya, but at least I had support from this amazing community of moms and a diagnosis.  I was determined, empowered even, by the information I had discovered to find a way to live with FPIES and not by it.  And I fell up!

I began to see things a little differently.  I could stop wondering why she was sick. I just needed to figure out how to conquer this beast.  I searched through the baby food book we had used with my son,  Jack, and became frustrated and overwhelmed.  Nothing in that book could help us.  That was for normal babies.  So I literally threw out the book!  I chucked it across the living room and it smashed against the wall and fell to the floor with a great thud.  And into the kitchen I went.

The kitchen has become my retreat- a place to think, to plan, to conquer this FPIES beast.  With the help of those amazing moms on BBC (and particularly one kitchen-chemistry-inclined mama) I began to manipulate my daughter's tiny menu into an array of new tastes and textures for her to explore.

My kitchen-chemistry success didn't come easily.  My first major chemistry experiment was with arrowroot cupcakes.  I was determined to make cake for my daughter's first birthday.  It didn't go well. Batch after batch went into the oven. Each batch looked like traditional cake batter.  Most began to bake and even smell like cake.  And then each batch dissolved into an oily, gooey puddle. 

Samaya's first birthday "cake" ended up being sorbet and it was beautiful! She loved it, and we were able to make the same happy memories as other kids have- messy first birthdays covered in sugary goo!  But the desire to make her cake never left. 

Over the following summer, we completely gutted and remodeled our kitchen.  The process helped me to push the envelope of creativity.  I had only a microwave and a grill to work with for months!  I enjoyed spending the time preparing fruits, veggies, and meats for my little one (and the rest of our family), but I was really hungry to bake!!!

Finally, my dream kitchen was complete and I could get to work!  With the help of my kitchen-chemistry friend I began to slowly build Samaya's menu.  Her list of safe foods has grown, and the flavor and texture  of my creations has improved dramatically.  I can now create a variety of foods that taste pretty close to their originals (and sometimes better!).  And of course, we have made some tasty cakes!  For her second birthday, I made kitty cake pops for everyone at her party to enjoy!  I have come a long way since those early days of flopped arrowroot cupcakes!

So I decided it was time to share.  Time to share my recipes (and organize them where I can find them).  Time to share our family's story of FPIES with others.  We still struggle with FPIES each and every day but it hasn't beat us!  We are a success story.  I have learned how this family can live with FPIES not by of it.  I have fallen up!  Up to a place of acceptance.  Up to a place of compassion.  Up to a place where, for her I can "throw down" and do whatever I have to do.  I hope you enjoy our journey and my recipes!