FPIES In The Headlines

When I first started researching FPIES, I found very little information that wasn't jumbled up in some medical journal that required a Ph.D to understand.  Today, a dear friend forwarded me the link to an article posted on the ABC News website.  The article is titled, Toddler Landon Schultz Eats Only 5 Foods or Goes Into Shock (written by Susan Donaldson James).  The article details the experience of a two-year-old little boy with a devastatingly severe case of FPIES, and how it has frightfully ruled his life and those of his family members since he was two weeks old.  As far as I am aware, it is the first time FPIES has drawn the attention of the network news or any other major mainstream media outlet, and therefore reached and entirely new, ENORMOUS, influential and important audience. 

Landon's family has gone to great lengths to shine a spotlight on FPIES.  Through the Children's Hospital of Philadelphia, they started the FPIES United Family Fund in hopes of creating awareness and developing research.

This could be the start of something BIG for the FPIES community!

My Cooking Buddy

We've come a long way from our original cooking demonstrations! In going with my original hopes of including favorite recipes on this blog, I thought I'd include one more... When this picture was taken, Claire and I were making Apple Snack Muffins, from a foodie blog that I follow.  We can't seem to make them fast enough, because her brother and daddy keep gobbling them up!  Here's a link to the blog, thenaptimechef.com, and the recipe we just can't seem to get enough of...  Apple Snack Muffins

Better Than Ever

I'm not sure how many people have looked at this blog recently.  I, sadly, haven't since the last time I posted in August.  Since we're starting fresh in 2011, I figured it was about time that I bring this journal up to speed...

Three days ago, Claire turned 18 months young and today marks the one-year anniversary of the day this adventure first began.  What a difference a year makes.  Since the initial terrifying FPIES episodes and the turbulent days leading up to and after the diagnosis, it's with a grateful heart that I say our lives (and nerves) have stabilized entirely. Claire hasn't touched a morsel of rice, oats, or sweet potatoes since we learned they were trigger foods and she's been episode-free ever since.  In addition, her milk intolerance was resolved naturally around her first birthday, and she's been indulging in limitless dairy goodness for the last six months.  Even more encouraging, she's tipping the scales at 23 pounds and standing 31 1/8in. tall (that fraction is hard earned!), which puts her in the 25th percentile range for both.  Dr. Boyce, her Pediatrician, gave her a squeaky clean bill of health for her growth and development.

We are relishing the peace and balance of the present, but we still have concerns about the future of Claire's FPIES.  Dr. Hubbard, our allergist, has suggested a food trial (in a hospital setting) around Claire's second birthday to check her tolerance (or lack thereof) to her trigger foods.  At first I was eager for closure on this chapter, but agreed that, at two years old, Claire's body will have matured enough to (hopefully) break down the offending foods without trouble and she can communicate with us as she undergoes the trial.  Two vast improvements from when we first began...

I have thought a lot about how I will continue this blog/journal since, these days, our life is so FPIES- uneventful.  Sometimes I feel embarrassed by how "easy" we've got it compared with those FPIES families that fight with it every single day; spending countless hours with old and new doctors, undergoing painful and frustrating tests, and waiting years for any sign of encouraging progress.  Our story hasn't played out that way.  We're one of the lucky ones, and I will never forget that.  I've decided to update this blog periodically, when I have experiences worth remembering or news to share.  I'd like to think that one day someone, a lot like myself on January 13, 2010, would stumble on this blog, and might feel a glimmer of hope.  It's taken 365 days for me to learn that everything is gonna be alright :)