Day One

Yesterday was far and away one of the worst days of our life. As an adult, you would never want to get word that one grain of rice can send you into a furious fit of vomiting and leave you in a state of shock. When you hear that news about your child... That's just below the belt. While my hard core pity party was yesterday, I can't say that I've taken my party hat off yet.I know that our family and friends are joining us on this turbulent ride, so I'll share with you the developments (albeit small) that have occurred in the last 24 hours.

After I wrote about yesterday's diagnosis, Claire and I set off to the lab at Clarian North for a blood draw. The allergist wanted to screen for anemia, her hydration levels, celiac disease (an autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oat), and a couple of other things that I didn't catch. It was mostly for precautionary purposes as the doctor doesn't see any real threat with the food history we've collected so far. Since Claire is a big 6-month-old now, the foot prick was just too babyish. Instead, they had to pull out a tiny tourniquet, a big needle and vials that seemed fit for a grown-up... I tried to hold her while they prodded around for her tiny veins, but her strength and my emotional weakness called for a second nurse to assist. They told me I could wait outside while she screamed and cried, but I couldn't bear the thought of abandoning her. It felt like an eternity before they filled the three vials. I carried her out of the hospital, both of us were tear stained and catching our breath. It looked and felt like we'd just lost a fight.

To add to our misery, Andy (with a fresh ear infection) fell down the last stairs and hit his head on the concrete basement floor... Thank God he was ok, but JP and I took turns checking on him throughout the night. I waved my white flag and called it quits to our nightmare day.

This morning I began poring through what little is known and available for families with FPIES. Through Amber (God Bless her!), I "met" a mom in St. Louis whose 3-year-old-son has been battling FPIES since his diagnosis at 13 months. We spent an hour on the phone and she gave me some excellent information and sage advice as someone who knows the realities all too well. I've also found some articles in various medical journals and sent off an email to one of the leading researchers of FPIES at Mt. Sinai Hospital in New York. I sure hope he checks his email.

Here's what I've come too... Clairey and I (and JP and Andy to a lesser extent) will not come in contact with anything with cow's milk, rice or oats. We will hold off on the other common triggers (while there is a list of "more common triggers", any and all foods can trigger a vomiting episode) like wheat, soy, sweet potatoes, green beans, peas, chicken, turkey and legumes until a much later date. We will start introducing her fruits and vegetables one at a time, for periods of one to two weeks (she might ingest it perfectly fine the first 3, 4, or even 5 times before another episode can land the food on the "Trigger List"). I will not start the trial and error process with new solid foods until we speak with the allergist again. My hope is that, before I introduce anything, Clairey undergoes an ATOPY Patch Test. This is a skin test in which small metal "caps" containing small amounts of a variety of foods (including triggers) are put on her back for a couple of days. Once removed, many times the skin will break out in some sort of rash beneath the caps containing foods that her body will reject. This is still in clinical study phase and hasn't proven absolutely accurate, but I will feel less like I'm "poisoning" her when I have some shred of hope that we'll add a food to our "HOORAY!" list.

In the event that we have another episode, and we will, we're going to be ready. I will introduce all foods on Monday morning so that any episodes will occur during the daytime when we have access to our doctors and help with Andy. We're going to set up emergency "buckets" in convenient locations containing towels, wipes, the EpiPen and diapers (for wearing AND catching vomit). I've been given excellent advice to look into a prescription for Zofran (and anti-nausea med) to slow down the vomiting and ward off severe dehydration and shock symptoms until we reach the hospital. We will be instituting new rules for eating in our home that include, but are not limited to, removal of all offending foods, eating strictly at the table, and (this goes for Andy) no sharing with Claire. Whenever we are not in the safe confines of our home, JP and I will act as Clairey's gatekeepers. We have so much to learn about reading food labels and finding the hidden ingredients in the foods we deem "ok". I know that we can't blanket the world in bubble wrap, but we'll sure as hell try.

Last night I couldn't sleep and I kept thinking that FPIES is like navigating a mine field everyday. One false move and we could send our baby girl to the hospital. It's a life-altering disease, if only for a few years (God willing), that will push us to the brink, emotionally, intellectually, physically... We weren't asked, or given advance notice or prepared for our new life, which scares me. I don't know what we are in for, but I do know that we aren't going to take it lying down.

You would never know by looking at Clairey's magnetic smile and chubby rosy cheeks that there's upheaval in her little body. As her gatekeeper, I will do everything to ensure her itty bitty insides match her radiant outward appearance. As her mother, I will pray everday for a speedy end to this so that she can go on and have a healthy, carefree childhood... One day at a time.