TRIUMPHANT!

I got an email from one of my close friends alerting me to something she'd stumbled upon, Dr. Leickly's Allergy Blog (you might remember the allergist from Riley who had never heard of FPIES and sported a rough bedside manner).  Well, turns out Claire's visit with him made a lasting impression.  Since meeting us, he's looked further into FPIES and has joined the conversation.  Dr. Leickly attended a conference in New Orleans and heard Dr. Sicherer (the doctor/researcher that I reached out to at Mt. Sinai the day after we were diagnosed) speak on the topic.  He then spoke to an audience of general pediatricians at a conference here in Indianapolis, pertaining to Perplexing Childhood Allergies, and passed along the information on FPIES. 

Praise God.

I hope that word of FPIES spreads like wildfire.  I continue to hope for effective methods of testing for trigger foods, so that FPIES families no longer need to "experiment" with children as we navigate the minefields of food trials.   Lastly,  I pray that FPIES will become common knowledge in medical circles, so that families will no longer be met with blank stares or brick walls from those we rely on for medical care and treatment.  The children deserve better than that. 

Dr. Leickly has redeemed himself :)  Here's a link to his post http://www.pediatricallergyindy.com/2010/02/17/fpies-food-protein-induced-enterocolitis-syndrome/

Claire Turned One!

During our trip to California, our baby girl turned one!  We celebrated this momentous day with a Clairey-friendly carrot birthday cake with cream cheese frosting.  I spent over two hours concocting her smash cake and it took minutes before she lost interest :)  It didn't matter though, it was the birthday cake that I didn't think I'd get to make.  For a long time, I was afraid I'd be sticking a birthday candle in her peach puree...  We are counting our many blessings that her first year wrapped up on such an incredible high note :)  Here's the recipe for Claire's cake (I made the carrot cake and used chopped dried apricots in place of raisins) http://www.wholesomebabyfood.com/tipFirstBDay.htm

There never was a healthier birthday cake :) 

We're Back!

First off, if you are still checking this blog--THANK YOU!  I apologize for being so terrible about updating it!  Thank you for sticking with me! We just returned from a huge three week trip to California to visit with my family and (sadly) the blog has been sorely neglected.  It might take me a few more days before I get all caught up, but I can promise that I have a few wonderful developments to share.  Life is good :)

Ice Cream

With a week of milk under our belts, I thought it would be alright if Claire took part in our after dinner treat.  The coldness of the ice cream caught her off guard, but otherwise, I think she's an ice cream fan.  I can't stop marveling all the deliciousness that she now has at her fingertips  :)

Trying

This whole milk thing has made for a trying experience... Mostly because I know what hangs in the balance--DAIRY FOR ALL!!! Clairey was disgusted by her 3 ounce bottle of milk this morning. I tried warming it up a little, and that wasn't the trick. Then I mixed it with breast milk (50-50) and she still wanted nothing to do with it. I couldn't figure out why her taste buds could handle all the asparagus she scarfed last night and reject a little cow's milk... At wits end, I put her bottle in her car seat with her and headed out on errands. Apparently, if she gets thirsty enough, Claire will drink anything :)

Got Milk?

I got milk. It felt weird to put organic whole milk in the shopping cart this week (next to Andy's 2%, JP's skim, and my almond milk). As I walked through Kroger, it dawned on me that it isn't my fear of Clairey's reaction to milk that's holding me back (although that's a big concern)... I'm in complete denial that she's actually OLD enough to try drinking cow's milk. Where has the last eleven and a half months gone? I've been so wrapped up in counting the days between food trials that I've failed to change the months on the calendar. She might be my baby, but that won't stop her from moving on to bigger things...


Yesterday I gave her 1/2 ounce of milk and today I gave her 1 1/2 ounces. Tomorrow we'll do 3 ounces, then 6, then two servings of 6, then three servings of 6. By the end of this week, she could be a dairy queen... That is, if I find the perfect way to serve it to her. I'm hoping she's a temperature snob, because she definitely wasn't digging her cold bottle of milk today. Regardless of the faces she makes or how far she chucks her bottle, her body seems to be embracing her new beverage :)

Mommy Gatekeeper

It's funny how drastically different two medical opinions can be.  Yesterday, I called the allergists office first, spoke with a nurse (I think...), who told me to stop giving her beans immediately, watch her respiration, give her an antihistamine, and take her to the ER if I notice anything alarming.  Immediately afterwards, I called my pediatrician's office, who told me that it was most likely a form of heat rash.  Since Claire wasn't having any GI troubles and her body was exposed to more heat, sunblock and sweat than usual, they felt confident that I should continue to feed her beans.  I guess this is a perfect example of Mommy Gatekeeper... It was my call (that's a lot of responsibility for the person who initially blamed FPIES for a bladder infection and now heat rash).  I sided with the pediatrician on this one.  So, I've been keeping her indoors, in airy clothing and free from any topical moisturizers-- and we've been chowing down on beans! 

Rethinking Beans

We just wrapped up the fifth morning of our bean trial.  All in all, Claire is happy, no vomiting, loose stools, or visible signs of discomfort.  I'm starting to question a suspicious rash that is appearing all over her body though.  At first I thought it might be a reaction to sunblock, something we've been slathering on a lot these summer days, but now I'm not so sure.  The rash (little red dots, spaced out all over her body and found more densely on her tummy) is located in regions that sunblock is not.  Her skin is striking an unsettling resemblance to that of days gone by.  Hmmm....

Breakfast of Champions

PANCAKES!

Budding Garden

Our garden is growing!! I swear, all it takes is a good rain and the plants are inches taller by the next day.  Nature is miraculous!  If the rest of our crops turn out as tasty as the spinach and lettuce then we're in for a treat of a summer :)

Creamed Wheat

We completely PASSED WHEAT! For breakfast, Claire has been eating banana muffins that I concocted with whole wheat flour, extra bananas in place of eggs and applesauce instead of butter. She gobbles up the gooey-ness :)   I can hardly wait to pull out my waffle iron... What's more, in just about a month,  she's going to dig into her very own smash cake at her first birthday party.  Watching Claire eat her cake will mean so much more than cake-in-the-face entertainment...

I can't believe how well her body has responded to everything I've spooned into her mouth over the last four months.  I'm hoping that the same goes for what I'm about to put into her bottle... Milk. Real cow's milk.

I've been thinking a lot about weaning Claire and it's just about time for us both.  She hasn't had a drop of anything but the good stuff since her reaction to regular formula in November.  So, I mixed up a bottle of uber-safe formula, Alimentum, last week to give it a shot.  Based on the fact that she nearly gagged and then threw her bottle, I think her answer is a resounding, "Hell no!".   I started to panic a bit, since that was my only known back up plan.  Then I talked to my pediatrician who told me to go ahead and try cow's milk.  We discussed a plan to start small and rapidly increase the serving size each day.  By the end of a week, she should be taking three six-ounce servings.  I'm a little in shock and a lot relieved.  Both our pediatrician and allergist agree that Claire should outgrow her intolerance to cow's milk protein (she has an intolerance, NOT FPIES to milk) between 12 and 18 months.  Apparently, we're close enough :)

We have a hefty trip to California planned during the better part of July, so, in order to give us plenty of time to trial while in close proximity to our physicians, we're going to be starting milk in the next week.  As far as I'm aware, the worst that could happen is she's developed an allergy to milk (although all of her previous skin prick tests would say otherwise).  If her intolerance remains, we'll deal with an upset GI system and more blood in the stools, but nothing that would land us in the ER.  If she passes her dairy challenge, she'll be indulging in nutritious and delicious big-kid foods in no time.

We've nailed 17 fruits and vegetables, we've proven corn is no match for us, and we've creamed wheat... Watch out milk, you've got another thing coming...

Kid Tested, Mother Approved

WE PASSED CORN!!  What an enormous relief!  This opens us up to so many new foods... Like corn-based cereal!  Clairey tried Kix the other day and she's completely hooked.  I actually poured a bit too much cereal on the tray of her high chair and she started hoarding them faster than I could clean them up :) 

A little bite of Heaven

I did it!

Passing corn gave me the confidence to try out potatoes (I was hesitant after our inconclusive sweet potato trial), and we've got two successful days under our belt... Cherries are next week and I'm contemplating Cream of Wheat after that.  I think I might need to sleep on it for a night or twelve...

Claire is 10 Months!

We just had Claire's "10 Month" well-baby check up, since her ninth month came and went with doctor's appointments for all sorts of other reasons... I am pleased to say that Clairey is 27 3/4 inches long (25-50th percentile) and 18 pounds 4 ounces heavy (25-50th percentile)! She is army crawling everywhere (with the occasional crawl on all fours), pulling up, waving, clapping, "talking" with all sorts of wonderful consonant sounds, engaging with everyone who glances her way, and eating 16 foods- including some finger foods!

I talked with the doctor about future food introductions and I've decided to keep going with my instincts. I love my pediatrician, but I really don't think he knows much about FPIES. We began trialing corn this week and her reaction has been just fine! I'm hoping that it will only be a matter of days before she tries her first cereal "snack" ...Kix! From here on out, we're going to keep up with the fruits and vegetables and give some grains and meats try, too. Dairy products will come sometime after her first birthday. I just can't get enough of the good news :)

I'm Alive!

That was an unexpectedly long hiatus! It's amazing how quickly the days and weeks seem to be passing. I guess no news is good news, right?


Today we are trialing food #15... Superfood Spinach. I was trying to spare her, but I just couldn't put it off any longer! I feel like we're knocking out the entire produce section of the grocery store with relative ease... and trying not to get over-confident about it. We're beginning to delve into foods that are a little harder to come by (cherries will be making an appearance soon), mostly because I am holding off on the more common triggers (peas, green beans, squash...) until we're left with no choice but to try those too. Even though I feel very supported by our doctors, they have given me few guidelines. I'm in a position to follow my instincts. So far that has worked out for us, but I don't know if and when our luck will run out.

I've been contemplating corn lately. I know that it is a more common allergen and it's low in nutritional value, but it would open the door to cereal and corn-based pasta that would rock Clairey's world. She's chomping at the bit to get her hands on something she can really sink her teeth into... Banana, pear, mango and avocado bits aren't cutting the mustard.

I checked out the FPIES message boards on Facebook and BabyCenter to investigate corn further. I was amazed by the stories that I read. We have been SO LUCKY up to this point. While it's impossible to know what is in store for us and FPIES, so far we have been dealt a much easier hand than so many other families. I was so sad to read about all of the children who react to any or all of the fruits and vegetables, milk, grains and other protein sources that they've tried... There are children that haven't tried new foods in months or a year... They've experienced painful hospital stays and testing... Reading these stories made me count my blessings again and again and hope for resolution for those families who suffer constantly. It also reminded me to never let my guard down...

I think our corn trials will be a last-minute decision. I've already got bags of frozen corn waiting to meet my Cuisinart and a box of Kix cereal that Andy has already claimed for himself (he inexplicably calls them "bumps"). To Corn or not to corn, that is the question...

Ode to our Vegetable Garden

Clairey Clairey, quite contrary, how does your garden grow?

With wood and a drill...

And holes to fill...

And Andy's watering can keepin' the flow :)

Chugging Along

In our case, no news is good news :) Claire has responded well to her daily apple-flavored antibiotics (based on how willingly she sucks it down, I think she considers it her dessert :) and we haven't seen any more signs of infection. As for her FPIES, three months after the last episode and diagnosis, my worries for another episode reside in the back of my head. Perhaps the daily precautionary measures are becoming routine and family-and-Clairey-friendly meal planning is a welcome (tasty!) challenge, or maybe we've just discovered that FPIES isn't going to change the game, but kick it up to the next level.

Claire has handled eleven foods brilliantly and so far number twelve seems to be falling in line with all the rest. She eats three meals a day at the table with us. I feed her varying portion sizes of her new food in the morning for breakfast and creative combos of her "Hooray! Foods" for lunch and dinner. I suppose it's my own paranoia, but I don't want her to go without eating any given food for more than a couple of days at a time. After our experience with rice cereal (handling it just fine and then having an episode after taking a break for a couple of weeks), I don't want her body to "forget" the foods we've painstakingly introduced with success :)

As she continues to hit her developmental milestones, staying one step ahead of her (literally!) make for additional considerations. Aside from the conventional baby-proofing, we have to make sure that there aren't any crumbs laying around that could find their way into her mouth... She's a bit of a slithering vacuum cleaner (her crawl is more of a slither :). Fortunately, at two-and-a-half, I think Andy understands as well as a two-and-a-half-year-old could, that food will make Clairey sick, unless it's given to her by mommy and daddy. I've already caught him telling her, "No Claiwey, that food makes you sick". It does my heart good to know that he's looking out for her, too :)

Radiology Follow Up

I got a phone call from our pediatrician today. He went over the results of the ultrasound and VCUG in terms that my brain could grasp. Seems as though Clairey has grade two vesicoureteral reflux and grade one hydronephrosis in her left kidney. That means the urine back flows up to the left kidney and results in mild swelling. Her right kidney, thankfully, is perfectly fine.

Our pediatrician referred us to a pediatric urologist. We are scheduled to see him on May 28th (a birthday present to me), which I took as a sign that Clairey's needs aren't severe enough to require immediate attention. In addition, we've been prescribed daily low doses of antibiotics to protect her against further UTIs and kidney infections. At this point, the treatment plan is for "spontaneous resolution", which is a fancy way of saying "let's wait and see if she outgrows it". I bet Claire is going to feel like a brand spankin' new ladybug in a few years when she's finished outgrowing all the things she needs to outgrow.

P.S. I got an encouraging answer to my question about screening Andy for reflux. Apparently reflux is far more common in girls and therefore Andy is most likely just fine. Phew. :)

Claire's Radiology Appointment

Clairey and I were at the hospital this morning at 8:30 and were seen by the ultrasound tech right away. Claire has developed an aversion to anyone in scrubs and she made that perfectly clear to everyone on the first floor of the hospital. She was awfully upset about the ultrasound...and that was the easy part.

Afterwards, we went straight into Radiology for her VCUG. They inserted a catheter, collected a urine sample, and filled her bladder with dye. Claire was in hysterics the entire time. I was able to hold Clairey's hands and watch the image of her bladder on the X-Ray screen. The radiologist explained everything I was looking at. Apparently Clairey has a huge bladder! We didn't see any of the dye leaking from her bladder until she started to urinate (the wait felt like an eternity).

The doctor told me that Claire has 2nd grade (4th grade being the worst) reflux on her left side. This means the dye left her bladder and traveled all the way up to her kidney. We couldn't see, definitively, if their was leakage on her right side, but if there was, it would only be 1st grade, as it didn't make it to her kidney.

The reason Claire's UTI resulted in a fever and shaking was because the infected urine traveled from her bladder into her kidneys and caused infection there. Over time, this can cause scarring on the kidneys and prevent further kidney growth. Bad news. The good news is we have our information now and we can start moving forward in our treatment. It will be up to our pediatrician to decide whether we see a urologist next or not. The radiologist believes, based on Claire's level of severity (and her own daughter's reflux), we're probably looking at giving her low doses of antibiotics everyday to keep her urine sterile (to prevent any more kidney infections). After about a year, they will probably do another ultrasound and VCUG to see if the reflux has cleared up on it's own. If not, we may be looking at other treatment options, including surgery (I was assured that there are some minimally invasive procedures).

Something interesting... Vesicoureteral Reflux is hereditary. All my life I've been told about the time I was hospitalized for a bladder infection at four months of age. That was the beginning and end of the story. They didn't perform the same investigative procedures then, as they do now. My mother struggled with significant kidney infections as a child and as our pediatrician noted, a person can live just fine without ever knowing their kidneys are damaged... Until they learn the hard way. Andy is also at risk for reflux. The results of Claire's tests today will no doubt raise questions with each of our own doctors in the future. Clairey may very well be leading us towards discovering our own medical histories.

Our sweet baby girl continues to take one for every team. I feel indebted to her in so many ways.

Green Enough Thumb

I thought I would share the teeny tiny beginnings of our vegetable garden...  We purchased a slew of veggie seeds and Andy and I planted lettuce, cucumber, fennel, peppers, squash and marigold seeds (to keep the bunnies away!) in egg cartons.  We've kept them next to the kitchen window for optimal sunlight and watered them every day.  Today we discovered the slightest sign of success... The lettuce seedlings are just beginning to peek through :)  We're hoping to get the outside garden started this weekend so we can get the rest of the seeds planted before the last frost.  A little surfing on almanac.com goes a long way :)

The beginning of our vegetable garden

Soon-to-be lettuce!

UTI Follow Up Appointment

Knowing what I know now, I am relieved that we went into the ER on Monday.  Today, we sat down with our pediatrician to go over the lab results.  Apparently the strain of bacteria in the urine sample requires different antibiotics than the original prescription we were given.  After visiting three different pharmacies, I found one that actually had it on hand.  Hopefully the meds will finally fight off the infection, get rid of her fever, and help her appetite get back on track...

I asked Dr. Boyce about possible causes for a UTI in a baby. He said that while it is most likely nothing significant, studies have shown that it could be attributed to an anatomical abnormality.  Just to make absolute sure that is not the case, we've got an appointment with a urologist on the morning of April 6th.  The urologist will do an ultrasound and  VCUG (they will inject special dye into Claire's bladder and then see, via X-Ray, which direction it travels) to make sure that she doesn't have Vesicoureteral Reflux (VUR).  VUR basically means there is an abnormal urine flow. There are varying degrees of VUR, the most mild cases can self-correct and the most severe require medical attention. 

The chances are decent that she'll get over this UTI and we won't think any more about it.  However, like everything else that we've been through in the last 8 months with Claire, we're erring on the side of caution.  I am grateful to the ER doctor and Dr. Boyce for acting quickly and appropriately for Claire's symptoms.  April 6th can't come soon enough-- Claire's nasty antibiotics will be completed and we'll figure out our next direction. 

P.S. In the last number of weeks, Andy taught Claire how to "shriek" and she figured out her "d", "t" and "m" consonant sounds.  She has been putting her happy little lungs and vocal chords to the test!  This morning at 4am, she had a lengthy NOISY conversation with herself.   I got to eavesdrop over the monitor...  I think she was trying to say something like, "don't worry, be happy" :)

A Day of Firsts

While my husband was getting the hang of things at his first day of work, I was re-learning my job as a stay-at-home-mommy-without-any-help-from-daddy :) Of all days to go it alone, yesterday wouldn't have been my first choice...


Claire woke up with a fever. From the moment I picked her up from her crib, her smile was noticeably missing. A smileless Claire is a rare sight, especially first thing in the morning. She was quite warm as I changed her, so I left her in a onesie and gave her Tylenol. After popping three teeth in three weeks, I figured another was on the way. She started broccoli yesterday morning and (surprisingly!) didn't fight it--something had to be wrong...

She was cranky for the better part of an hour, so I put her down for a nap. By the time she woke up from her nap, it became very clear that she wasn't feeling any better. She cried most of the time that Andy and I spent planting our seeds in egg cartons, and calmed down a bit when I held her. At about 11:00, I felt her start to shiver. I thought she might be cold, so I held her close and watched her closer. Her shivers turned into all-out shakes and I got really worried. I scheduled an afternoon appointment at the pediatrician's office. By the time I hung up with the Triage nurse, she was shaking, the color in her face was draining, and her hands were starting to turn purple. I called the Triage nurse back and told her the developments and asked if I should take her to the ER... Yep...

I was frantically zig-zagging across the house grabbing jackets, snacks, toys for each kid, and all of my FPIES material. We were out the door in under 10, and Claire was still pale and shaking. We got to the ER in 5 minutes, at which time Claire's color started coming back and the shaking had subsided. There was a split second when I thought about turning for home, but my gut said, "stay", so that's what we did. The nurses took Claire's medical history and her vitals and a sample of her urine. That baby girl is tough as nails--even as they inserted a catheter. Andy sat on the other side of the room and said, "It's awight Cwaiwy..."

After three hours of reading the same book repeatedly, playing cars, and keeping Andy as far away as possible from all plugs, computers, buttons, and Bio hazard waste cans, we saw the doctor. During our wait, Claire had recovered from all previous symptoms and a quick exam revealed nothing of concern. I felt like an idiot. I was about to acknowledge that my fear of another "episode" landed Clairey in the ER for teething pain, when the doctor returned with some preliminary results from her urine sample. Clairey has a bladder infection. I guess my motherly instincts can be trusted after all :)

As we were waiting for Claire's antibiotic prescription to be filled, I treated Andy (for the first time since September!) to a hamburger and apple slices from McDonald's for being an angel at the hospital. If Claire could drink it, I would have given her a super-sized milkshake. Instead, she got a bottle of antibiotics and her first taste of broccoli. She deserves pears for dessert :)

A Small World

My husband got a new job!   As a stay-at-home mom, we rely heavily on my husband's job and his career satisfaction is of the utmost importance to our family.  I believe our new direction is going to lead us to just that.  Of course, new jobs aren't as simple as showing up and learning the ropes.  At least ours never are.  After a training period lasting six to twelve months, we'll be packing up and heading to the Gateway To The West, St. Louis, Missouri.  As an adopted Midwesterner (whose roots are still firmly planted in California), I know very little about St. Louis.  Let's just say, when the words "Saint Louis" s-l-o-w-l-y came out of my husband's mouth, my imagination cooked up a horrific scene of us living in some soon-to-be-condemned house with bars on the windows and doors, in the slums of a gang-ridden wasteland.  He must have seen the horror on my face because he then informed me that we wouldn't be living in EAST St. Louis.  Phew. (I certainly don't mean any disrespect by saying this.  It just shows that I know almost nothing about Missouri...)

Once I learned that there are TWO Whole Foods in the St. Louis Metro area, I cooled my jets.  Sounds silly, I know, but when you've moved four times in the last six years, you've got to start someplace.  The more I think about our new future, the more excited I get... Here's what I've come up with so far:

- We will still be only four and a half hours (driving) from my twin sister's family
- We will be on central time zone so I don't have to wait until lunchtime to talk to my Cali-based family AND I won't lose sleep over my favorite television programming.
- The winters will be easier on my thin-ish (I mean this only in the figurative sense) skin
- There will be both water and mature trees, two crucial characteristics in my vision of "Utopia"
- My kiddoes have no trouble making new friends
- My husband will be happy

(I'm choosing to ignore the fact that it was included on Forbes' "20 Most Miserable Cities" list, an unfortunate find in my early research)

There's one more thing...  The morning after we learned about Clairey's diagnosis, I spent an hour on the phone with a woman I'd never met, Kimberly, the mother of a little boy with severe FPIES.  She gave me a unique perspective, helpful advice and ideas, questions to ask our doctors, and hope that Claire will enjoy her early childhood like every other little munchkin.  She energized me to get to the heart of the matter and inducted me into a sisterhood of mom's that do the same for their own children, everyday.  Kimberly lives in St. Louis.  I know that with a little help from our friends, Claire will have top-notch care there, too :)

St. Louis will surely be another fantastic adventure in this small, small world...

Bread Making 101

In going with my promise of limiting prepackaged foods in our house, I decided to channel my Italian grandmother, roll up my sleeves and start "kneading".  Much like brownies last week, our house has been lousy with batches of bread the last number of days... And I mean that in the best way possible (except for one failed attempt at sourdough, created from my week-long experiment at culturing sourdough starter.  It tasted like a cross between malty-beer and chewy pumpernickel.  Total bust). 

My grandmother came to America when she was a teen, speaking no English, and knowing only a couple of relatives.  She eventually married my grandfather, a Navy seaman, and raised four children on a shoestring, all by herself, for nine months out of every year.  While she spent the vast majority of her life on American soil, she never lost her Italian accent or her passion from homemade, organic and delicious foods.  Grandma cooked "organic" before "organic" was trendy.  While grandma passed on a few years ago, she left me with memories of punching dough, cranking the handle of her pasta maker and picking grandiose zucchini squash from her gigantic backyard garden.  She and my brother picked a small branch from a fig tree near our house and with a whole lot of love, she grew it until it produced more figs than she knew what to do with. 

I distinctly remember her tuna boat (that's what we called her beast of a truck.  It was big, old, green, and actually sounded like a boat), coming to pick us up from school a couple of times a week.  She always brought fresh rolls of bread (this all began when she realized my hungry little brother stopped eating his lunch at school because he was so grossed out by other kids eating with their mouths open.  His hunger strike was met with such gratifying rewards :).  Her bread delivery was so fresh that we'd rip open the rolls and both steam and melted butter oozed out.  I wish she were still alive so that I could steal all her secrets... And so she could deliver her bread to me again.

I may not have all of her tricks of the trade, but I do share my grandma's passion for food.  In today's bustling society, we hardly have time to sit down to eat, much less make something from scratch, or smell the...bread.   Thanks to Clairey, I'm a born again foodie. 

Hello, Lover.

Claire's first lesson in bread making

In case you'd like to give bread making a shot, here is the recipe that I've been working with for Classic White Bread .  We also approve of the Cinnamon Raisin variation :)

Prunes, Prunes the Musical Fruit...

I am in love with Whole Foods.  I think my cholesterol and blood pressure actually lower when I pull into the parking lot.  I like to go on dates with myself to Whole Foods and stroll up and down the aisles until there isn't anything new to look at.   I like to smell things, ask dumb questions of the staff, see where produce is grown, and read ingredient labels.  I daydream about how lovely it would be to have the entire bulk section in my pantry.  Since the store has earned the nickname "Whole Paycheck" among our circle of friends, I rarely buy much.  I do, however, like to "surprise" my husband and kiddoes with little treats.  Last time, my husband got an apple turnover, my son got a blueberry bagel (he'd had a hankering for one, of all things), I got organic popcorn kernels for myself and Clairey got prunes. You may be thinking that Clairey got the short end of the stick, but I beg to differ.   Her taste buds are totally sold on prunes and so long as her prune puree continues to pass the FPIES test, then her insides will continue to thank me, too.

Food, Inc.

Claire's FPIES diagnosis has made me look at food differently.  I've become wary of all processed foods and I'm gravitating towards all things wholesome, organic and sustainable....  And then my husband and I rented "Food, Inc." for yesterday's Blockbuster Date Night.  That sealed the deal...

It's pretty easy to turn your back on unpleasant information because it's easier and more convenient to keep doing what you do. The difference is "Food, Inc." is about the food that we pass between our lips all day, everyday.  I found myself covering my mouth and my eyes numerous times-- and this isn't a horror movie, just a documentary about the food that I serve to my babies.  I encourage everyone to open themselves up to learning about the way in which our country eats and how we got here...  It's far from the diets of our grandparents.

The good thing is there is plenty that we can do to keep our families healthy and encourage positive change for all people.   It's not about giving up all of our luxuries, wearing burlap sacks and eating the same food we feed to our livestock (you definitely wouldn't want to do that).  There are small, inexpensive, changes that you can make that can make a world of a difference.  I, for one, am going to cook a vegetarian entree and a seafood entree once a week.  I am also looking into "buying local" when it comes to produce and (hopefully) meat and poultry.  I have located natural food stores, farms, and green markets around my area that offer many of the foods I would ordinarily purchase at the grocery store, only much fresher and with no pesticides, hormones, or antibiotics.  Lastly, (for now!) I am re-thinking my springtime plans for a few potted vegetable plants and expanding it to a garden that will actually feed us, even on a small scale.  I'm positive it will energize more than just our bodies.

In case you have a little time to surf the 'net---Learn more about eating well in your area at Eat Well Guide .  For more more information about Food, Inc. check out the website and rent the movie. Lastly, if you find yourself at a loss for your next book to read, check out "Food Rules" by Michael Pollan.  It's short, sweet, to the point, and will show you that eating better is a cinch.

As You Like It

I've always walked the staright and narrow, colored between the lines, followed recipes to a tee...  My quest for the most decadent, moist, chewy, dairy-free, soy-free, rich, gooey, chocolate-covered brownie for people who can't eat the real ones, was... challenging.  The nice thing about picking up a cookbook and following someone else's recipe is you always have someone to blame when your concoction isn't edible.  Baking is a science and after my first two chocolately experiments, I had no one to blame but myself.  (Some people make pot brownies, I made prune brownies...)

Lucky for my family, third time was the charm.  I decided this would be a "Build Your Own Brownie" with several options based on your mood, what's in the pantry, the occasion, and/or the severity of your chocolate craving. 

The Brownie
In an effort to avoid the soy found in some oil, I chose to use banana puree in its place.  Not only does it make the brownies a tad bit healthier, but it also gives a yummy hint of banana.  Think... warm, fudgy, chocolate dipped bananas... It won me over, and I can't stand bananas.
 
1/2 c oil or melted butter (I substituted 1/2 c banana puree, plus approximately 3T water)
1 c white sugar
1 t  vanilla extract
2 eggs
1/2 all-purpose flour
1/3 c unsweetened cocoa powder
1/4 t baking powder
1/4 t salt
1/2 c chopped walnuts (optional)

1.  Preheat oven to 350 degrees.  Coat a 9x9 inch baking pan with non-stick spray.

2.  Mix oil (or melted butter or banana puree & water) and cocoa until smooth.  Add sugar, vanilla and eggs.  Mix until thoroughly combined.  In a separate bowl mix flour, baking powder, and salt.  Add the dry ingredients to the wet ingredients.  Stir until smooth.  Add walnuts, if desired.  Pour batter evenly into the prepared pan.

3.  Bake for 25-30 minutes or until the brownie begins to pull away from the edges of the pan and an inserted toothpick comes out clean.  For a slightly chewier brownie, remove from the oven a couple of minutes early.  Let cool on a wire rack and cut into squares.

Chocolate-Covered Brownie
Coating the brownies in chocolate posed a problem.  Unless you can get your hands on dairy-free and/or soy-free chocolate chips (Sunspire and Enjoy Life carry dairy-free AND soy-free, while Divvies is only dairy-free), you might have to opt out of the Chocolate-Coveredness... Never fear, I have another option for you (see below).  If you do have chocolate that fits your dietary needs, then you're in for a TREAT!

You will need a double boiler or a bowl that fits on top of a small sauce pan (you can probably figure out how to do this in the microwave, but I haven't tried it yet).  Fill the pan with about an inch of water.  Pour your chocolate chips (or chunks) into the top of the double boiler (or the bowl).  Heat the stove to medium-high heat and bring the water to a boil.  Stir frequently as the chocolate melts.  Once the chocolate is smooth, working quickly (and carefully!), dunk the brownie squares into the chocolate.  Let cool on a wire rack and  refrigerate.  ENJOY!

Chocolatey Fondue-y
This next recipe is adapted from a Chocolate Sauce recipe found in Real Simple.  It is basically a creamy chocolate dip.  It can be used for these brownies (although I wouldn't recommend it if you already covered them in chocolate--even I think that's excessive), fruits, sundaes... or heaping spoonfuls.  It's dairy and soy-free :)

1/4 c granulated sugar
3 T cocoa powder
1/4 c water
10 large Marshmallows
1 T oil (I used canola oil, which contains no soy)

In a small saucepan, combine sugar and cocoa.  Gradually whisk in 1/4 cup water and bring to a boil.  Reduce heat and simmer, stirring, until slightly thickened, 2 to 3 minutes.  Add marshmallows and oil.  Stir continuously until the marshmallows have melted and the sauce is creamy.  Serve immediately with plenty of delish dunkables.

The Toughest Critic Has Spoken

My Promise To You

There isn't such thing as Chocoholics Anonymous or Rehab for Chocolate Addicts... I googled it.  If there were, I'm certain my family would have staged an intervention long ago and I would be sitting someplace in the mountains of Utah cleansing my palate.  But there isn't, they haven't, and I'm not. Instead, I've ingested 15 of the 16 ounces of my chocolate stash and an emergency family trip to The Sweet Shoppe today revealed--gasp--they are fresh out of Divvies chocolate chips.  My body went numb.  And then I saw it... Chocolate covered brownies.  The moment I laid eyes on them, it stirred something in me (most likely it was my stomach growling).  The mouth-watering confection set me on a quest to create the most decadent, moist, chewy, dairy-free, soy-free (For Jen!!), rich, gooey, chocolate covered brownie for people who can't eat the real ones.  The one I create will make the dietary limitless folks out there jealous... This is my solemn promise to you.

Eat Your Colors

It's something we've heard since childhood... Look at your plate as a palate and eat your colors everyday.   I've had the privilege of making all of Andy and Claire's baby food and it thrills me to add new colors to our hued food spectrum.  This week the rainbow ends with a pot of.... carrots :)    

Chocolate Discovery!

This year my husband completely blew me away for Valentine's Day.  He endured my ugly chocolate withdrawl and then sprung into action.  He tracked down dairy-free, nut-free, egg-free CHOCOLATE!!  And then, because this heavenly tastiness doesn't come cheap, he actually made me promise NOT to share.  Sorry ladies, he's taken :)  For all of you out there with dietary limitiations that are wiping away the drool... You, too, can uncover this sugary treasure trove by visiting http://www.divvies.com/.  You're welcome :)

Clairey started apples today and took to them as easily as she did pears.  An apple a day keeps the doctor away-- I'm just sending up prayers that the opposite isn't true... 

Moving Right Along

Clairey turned seven months old this week!  Equally monumental: we're five days into avocados and it looks like our "Hooray! List" is about to get a little bit longer!  Claire has been testing new food in the morning and then eating her old foods for "dinner" with the family.  Tonight I was able to sneak a little bit of banana into her beloved pears... She didn't even flinch :) 

We've adjusted well to our new eating schedule and I think it's improving our sleep schedule, too.  After our 17 pound weigh-in, I felt comfortable to nix the last, lingering night feeding (by the way, I feel like every pound is a medal of honor--those lbs. were hard earned!).  After an exruciating 2-hour cry-it-out session the first night, the next night was 45 minutes, and the third night was... peaceful.  I've waited seven long months for an uninterrupted night of sleep and it was... dreamy :)

Unlikely Phone Call

I just got off the phone with none other than my favorite doctor... Dr. Leickly. I guess all my voodoo paid off :) I'd planned an arsenal of 4-letter words to hurl at him, if I ever found myself in this position, but the call shaped up to be a reconciliatory 2 minute 43 second conversation. Turns out that website of his might be worth checking out... He told me that he was looking further into FPIES and would post information on his website to draw the attention of other specialists. Two days ago I would have never dreamed these words in the same sentence--I think Dr. Leickly is going to help us.

The Opposite of Helpful

It's my own fault for placing today's visit to Riley Children's Hospital on an unattainable pedestal. I'm also to blame for pinning Dr. Leickly as an allergy god that could solve all of our problems through divine intervention. I went into today's appointment with unrealistic hopes and optimism and I left utterly crushed. Apparently, our FPIES is so rare that acclaimed doctors at prestigious Children's Hospitals don't even know what F-P-I-E-S stands for and laugh when I say it out loud.

The fresh load of snow and disagreeable roads could have foreshadowed the experience we were in for. At the doctor's office, I rattled off our entire story to a medical student and then waited to see the doctor. When Dr. Leickly finally walked into the room, he looked perplexed and talked loudly about the complexity of Claire's case. He also told us that he doesn't even deal with kids with proctitus. If he'd have told us right then and there that we were in the wrong place, he would have saved us all a couple of hours of our lives... But he didn't. Instead, he shot down pretty much everything we said as "infeasible" or "rare". But it IS feasible and it IS rare... So now what??

Even though we provided him with a stack of medical records half-an-inch thick weeks ago, it quickly became clear that the records hadn't seen the light of day. Fortunately, I brought along my binder of research and produced a study on FPIES from the Journal of Pediatric Medicine. That Journal fueled the remainder of our consult with him... As in, he looked at the data page and called out information we're already pretty well versed in. I'm contemplating billing him for my time...

He then suggested we do yet another skin prick test just to be sure Claire doesn't have a Type 1 allergy to milk, rice, oats and sweet potato. I told him that I was confident the tests would all be negative, but I went along with it just to prove my point. As predicted, Claire's only reaction was to the histamine control. Even after we went through all of that, he wouldn't confirm our FPIES diagnosis. He advised us against feeding her the foods that she's reacted to in the past and assured us that any additional "triggers" are highly unlikely...Oh yeah, and to check out his website (???).

There are a couple of GOOD things came from today's visit. First, I have a phone number for a dietician. Second, I have a renewed appreciation for Dr. Hubbard, his knowledge, his support and his bedside manner. Third, Claire is tipping the scales at 17 pounds (75th percentile!!) and from here on out we're finished with non-nutritive middle-of-the-night feedings! Last, we're going to work through our FPIES grass-roots style. The rareness of this disease means that there aren't FPIES specialists at our fingertips. Assembling Team Claire is going to require reaching out and screening allergists, gastroneurologists and dieticians long before we ever step foot in their office. As much as I'd love to educate the medical world on FPIES, I have my daughter to worry about first.

This day is turning out to be a dumpster fire. Maybe some avocados will help :)

Eating Right

I knew that embarking on this FPIES food challenge with Claire would lead us to some pretty interesting findings. After watching a couple of serendipitous Oprah shows (I need to climb off my soap box for a second to clarify something... The only television programming that I break for is the occasional Oprah and every single Bachelor... I'm really not a couch potato) centered on the gut-churning documentary "Food Inc." and Dr. Oz's wake-up call to diabetes, the puzzle pieces started coming together. Claire's diagnosis has forced us to turn away from pre-packaged and processed foods and into all things fresh and wholesome. It's as if our little ladybug is leading us towards becoming the healthiest little family that we can be!

I consider myself to be the Commander In Chef of my house. I am the one who researches, plans, cooks and serves everything that comes through our kitchen. I take a lot of pride in the healthy food that I've always fed my family. However, since January 14, my quest for a healthy family has become much more driven... I'm getting down to the brass tacks of nutrition. We've tried a slew of new foods that we've always categorized as "granola" (a.k.a. "earthy"--which we never considered ourselves to be) and actually liked them! There's nothing scary about quinoa! And almond milk...it tastes like a milkshake mixed into my Grape Nuts every morning! Where have you been all my life!? Besides the taste factor, it is SO SATISFYING to be able to pronounce every ingredient we're filling our bodies with.

My goal is to continually add our "four star" recipes to this blog --you can take it up with my husband if you disagree :) Hopefully others of you can enjoy the immediate and long-term benefits of eating right along with us!

Quinoa Tabouleh
"Gluten Free and Easy" Robyn Russel

1/2 c quinoa (or rice), cooked in broth
1/4 c sun dried tomatoes, chopped (or regular tomatoes cored and diced)
1 short cucumber, seeded and diced
6 scallions, finely chopped
1 c finely chopped parsley
3 T olive oil or the oil reserved from the sun dried tomatoes
3 T lemon juice
1/4 t crushed garlic
salt and pepper, to taste

1. In a large bowl place the tomatoes, cucumber, scallions, and parsley and toss to combine. Stir in as much of the quinoa as needed to give a balanced look to the salad.

2. In a glass jar with a lid combine the olive oil, lemon juice, garlic, and salt and pepper. Shake well. Pour over the salad, toss to coat and serve.

Apple and Carrot Muffins
(Adapted from Zucchini Muffins, "The Best Life Cookbook", Bob Greene)

2 eggs or 1/2 c egg substitute
1/2 c plain almond milk (or skim milk for the non-dairy-free :)
1/4 c honey
1/4 c sugar
3 T olive oil
1 c whole wheat flour
1 c wheat bran
2 t baking soda
1 t baking powder
1 t cinnamon
pinch of salt
1.5-2 c unsweetened applesauce (I used Claire's apple puree)
1/2-1 c grated carrots (add the applesauce and carrot slowly, ensuring the consistency isn't overly moist)
1/3 c raisins (we used Golden Raisins)

1. Preheat oven to 350 degrees.

2. Combine the eggs, milk, honey, sugar, and oil in a bowl. Once completely mixed, add the remaining ingredients and mix thoroughly.

3. Divide batter into muffin tins and bake until a toothpick inserted comes out clean, about 17-20 minutes.

Makes approximately 16 muffins
**To make Zucchini muffins, omit the applesauce and carrot and add 3c of grated zucchini.


Cottage Pie
"The Best Life Cookbook" Bob Greene

POTATOES
2 medium, skin on
2 t olive oil
coarse salt to taste

BEEF/TURKEY
1T olive oil
2 large carrots, peeled and finely chopped
1 onion, chopped
1 pound 95% lean ground beef or ground turkey breast (we used turkey)
4 c spinach, well washed and stems removed
coarse salt and pepper to taste

1. Place the potatoes in a pot and cover with water. Bring to a boil and cook until the potatoes are tender, about 20 minutes. Once tender, drain the potatoes, add the oil and salt and mash all together with a wooden spoon. Set aside.

While the potatoes are cooking...
1. Preheat the oven to 375 degrees

2. Add olive oil to skillet and heat over medium to medium-high heat. Add the carrots and onion. Cook until slightly brown, stirring often.

3. Add the meat and cook until browned. Add spinach and stir until wilted. Season to taste with salt and pepper. Remove from stove.

Assemble...
In a 9-inch baking dish, place the meat mixture and cover with the mashed potatoes. Bake in oven for about 10 minutes and then broil until the potatoes form a golden crust.

**I had to satisfy my Midwestern hubby with a little bit of brown gravy on top :)


Graham Crackers
"Beat This!" Ann Hodgeman
I heard once, "Eat all the junk food you want...so long as you make it all from scratch." Here's one to satisfy the sweet tooth. Pair it up with a glass of cold almond milk and your in for a treat!

1 1/3 c whole-wheat flour
1 c all-purpose flour
1/2 c brown sugar, packed
3/4 t baking soda
1/2 t salt
1/2 t cinnamon
1/4 t ginger
1/4 c unsalted butter (I used a non-dairy butter spread)
1/3 c honey
5 T cold water
1 t vanilla extract

1. Preheat oven to 325 degrees

2. Place flours, brown sugar, baking soda, salt, spices, and butter (or spread!) in a food processor. Combine with a few pulses. Add remaining ingredients. Pulse and then let it run for 30 seconds, or until the mixture forms a ball.

3. Divide the dough into two smaller balls. Spray two cookie sheets with non-stick spray. Dust the dough with flour and roll it out into a rectangle (I suggest rolling the dough to approximately 1/8 inch thickness for a cake-ier cookie :). Cut the dough into smaller squares or rectangles (which ever floats your boat!) and transfer each to the prepared cookie sheet. Prick each cookie all over with a fork.

4. Repeat process with the rest of the dough. Bake, one sheet at a time, in the oven for 12-15 minutes.

Allergist Appointment

Today we had our follow-up appointment with Dr. Hubbard, our first allergist. It was a 30 minute Q & A session. While I didn't learn anything earth-shattering, he did a super-duper job of reassuring me that we're doing all the right stuff.

We established that Claire's proctitus to cow's milk (the blood in her stools) is far less dangerous, but an allergy to the protein, nonetheless. The encouraging distinction between her proctitus and her FPIES (to oats and rice/sweet potatoes), is that she should outgrow the proctitus by her first birthday or shortly afterwards. Great, great news...

We also talked further about the skin prick testing that he performed last time. He tested her for oats, milk, soy, wheat, eggs & peanuts and all of them came back negative. I was about to start skipping around his office when he told me that a negative allergy test now doesn't mean she won't develop allergies to those foods over time. How on earth am I NOT going to be paranoid?

Last (and best), he validated my efforts to be seen by Dr. Liekly at Riley Children's. At Riley, we will have the option to do ATOPY testing if we choose to go that route, we will have access to all of the knowledge and experience of an expert in childhood allergies, and we can ask for a referral to see a dietitian. I hadn't given much thought to seeking out a dietitian before today, but I am eager now! It is imperative to me that I am meeting all of Claire's nutritional needs without putting her in danger of ingesting her trigger foods. I hope that by meeting with a dietitian, we can collaborate over a detailed road map for Claire's future food trials while maintaining her consumption of healthy, well-balanced meals on a day-to-day basis.

Only six more days before Dr. Liekly will open another door for us!

Silly Me

We pulled off the impossible this morning... I showered, dressed, got Clairey up and dressed and fed, and packed an emergency bottle all before 8:30am. At about 8:35, I was putting the finishing touches on The List (of questions) when I got a reminder call from the allergist's office about our appointment....Tomorrow at 9am. Apparently I killed off my last few brain cells watching The Bachelor last night (it was so worth it though). I'm not sure if I can accomplish the same insurmountable feat two mornings in a row...

P.S. We love pears!

Tackling Pears

We have our first food on the "HOORAY! List". Bananas were painful at times, most times actually, but she conquered them like a champ!!

This morning, I decided that after 5 days without any signs of reaction, it was time to put Clairey out of her banana-induced misery and begin tackling pears! My sister, in all her brilliance, suggested I try putting some pear puree on my finger to let Claire work on it that way at first. This approach allowed her to sample the puree without squirming at first sight of the spoon. Once she acknowledged their tastiness, I spoon-fed her tiny amounts. She ate about 1/2 teaspoon today and seemed to want more! I can hardly wait to give her a whole 3/4 of a teaspoon tomorrow! Bring it!

Lastly, we have an appointment with our first allergist (NOT Rielly) tomorrow morning. I'm hoping he has something profound to share with me regarding a cure for FPIES... Otherwise, he'll feel the wrath of my list of questions...

Day 2 & 3

So far bananas are going well... Except that she despises eating them! How sad! The one and only food she can eat goes down like bad medicine. I hate "forcing" her to eat it, but I'd hate even more to lose all the ground we've made by having to discontinue the trial. I just hope her taste buds have a change of heart in the next few days...

So Far So Good

We're going on six hours since Clairey ingested her first 1/4ish teaspoon of bananas. Aside from a few more "gas bubble hiccups" (I wouldn't use the word "burp" to describe the sound) than usual, she was a very happy little girl all afternoon. Tomorrow we shoot for a whole 1/2 teaspoon of bananas... Cautiously optimistic :)

The Waiting Game

I gave Claire her first taste of bananas about 70 minutes ago. It was only a 1/4 teaspoon, but she didn't seem like a fan. I am forcing myself to believe that her reaction means her taste buds have never experienced anything so sweet, and not that they instantly recognize something that will make her sick. Right now she is sleeping soundly in her crib. I hope that the next hour or two pass quickly. It's the first time in her life that I've wished and wished for time to go faster. No matter how much you mentally prepare for something, I doubt you can ever reach emotional preparedness.

Everything I've ever given her to eat, her body has rejected. Today I prayed that bananas would be the first of infinite foods that will make her body healthy, strong and happy. I guess we'll know soon. Then we'll try it all over again tomorrow.

Going Bananas

Just when I was getting cozy with the idea that our food trials were as ways off, I got a call from our pediatrician...

Dr. Boyce called to go over some results of Claire's labwork... Or lack thereof. Apparently, the celiac test was never performed because the blood sample was "too fatty". My heart stopped a second. The nurse at the allergist's office said everything was normal... Apparently, everything ELSE was normal. Dr. Boyce believes that (based on my description of our dramatic blood draw), because they stuck Claire in a particularly chubby part of her little arm, they extracted some fat in addition to the blood. While I like where his head is at, a "contaminated" sample is just one more thing that strays from "the norm". Nothing is simple... He didn't order a second celiac test because there is nothing in her medical history that would lead him to suspect that she has celiac disease. Namely, she's never eaten gluten and, therefore, never reacted to it. In conclusion, we decided to bring all this up with Dr. Liekly at Riley Children's to let him decide.

As soon as we established a likely cause for the "fatty" blood draw, I unloaded my list of questions on him. I know that he isn't an allergist and his areas of expertise are much more broad and much less specific in the allergy department, but I appreciated him listening-- even if I didn't totally agree with everything he said. It's just further proof that you can't take everything the doctor says at face value. We are our children's advocate, and we have to educate ourselves as such.

I told him that I was waiting to try solids with Claire until her appointment with Dr. Liekly, the day before her 7 monthiversary. I also told him that I was concerned that she wasn't getting all the nutrients that a baby of her age should be getting. Her appetite continues to increase and I'm worried that our exclusive breastfeeding isn't going to satisfy her much longer. He encouraged me to start solids now... I know that nothing is going to change between now and February 9th as far as my own fear goes. I also know that it's very possible that the ATOPY testing might be a ways off. Is it fair for me to keep her on a solid food strike simply because I can't bare the thought of sending her into another episode? For all I know, our triggers have already revealed themselves and the rest of the food world is her oyster... I guess we'll find out tomorrow...or the day after, or the day after that... It looks like we're starting with bananas tomorrow--that is, if I don't go totally bananas first. Breath....

On The Books

We had a trying start to the day, but it picked up a little as the morning progressed. I learned by the fact that I was the one and only car in the drop off line at my son's "school" (Moms Day Out) that all schools in the county were closed due to icy roads. That made sense considering the asphalt was like an ice skating rink and my car was sliding down the driveway with the emergency break on. We sought refuge at my girlfriend's house for a play date and the morning started taking a turn for the better. I got a phone call from my pediatrician's office that all of Claire's pertinent medical records had been faxed to the pediatric allergist at Riley Children's. We got an appointment--for February 23rd. Grrr... That's a month from now. Once I recovered from my initial disappointment, I decided that I'm not in this to make friends. I called Riley and begged, bargained and pleaded from an earlier date. I think she realized that I wasn't going to hang up the phone until I got what I wanted and she pulled some strings to get us in February 9th at 10am. While I'm not completely satisfied, it's much better than the alternative. Maybe a special delivery of chocolate chip cookies would land us an appointment in January... :)

Score!

I just got off the phone with our allergist's office and they delivered a bit of GREAT news! Seems as though our little ladybug's blood work came back completely NORMAL! I am ELATED! No celiac, no anemia, no whatever-else-they-tested :) Also encouraging, it looks like they are actually going to release their death grip on Clairey's medical files and fax them over to Riley Children's Hospital without me having to jump through hoops of fire :) It remains to be seen, but the prospect is reassuring. We're off to a running start!

Team Clairey

I am pleased to announce that Elementary School children aren't the only people to observe Martin Luther King Day. Apparently, all allergists in the state of Indiana also take the day to pay their respects. It was a good reminder for my impatient self that there is more happening in the world besides our FPIES...

While I was on an involuntary recess from assembling "Team Clairey" (that's my new term for all of the family, friends, nurses and doctors that are working towards seeing Claire through this disease), I tried my hand at my new culinary cuisine... I feel like I'm getting back to my tasty California roots! In one short week I've gone from health conscious to health NUT! Yesterday, I purchased an industrial size bag of quinoa and today I picked up a couple of boxes of almond milk. Judging by the fact that grocery shopping today took 50% longer than our past trips, excluding dairy, rice and oats from our pantry and fridge is just as hard as it sounds. I have confidence that it will get easier though. On another note, my new dietary regime has given me the unexpected perk of seeing the scale hit numbers I haven't seen since college. Apparently I was single-handedly keeping the dairy industry in business :)

I agree with our allergist for erring on the side of caution by instituting this elimination diet, though I believe Claire would be fine even if he didn't. For me, the real reason for cutting everything out, cold turkey, is more of a tribute to Claire. I want for her to see that it is very possible for us to live a tasty, healthy life, even with limitations. It might be a little over her head, but I like to think she understands :)

One more small development... Thanks to one of my incredible mentors, Cindy, a nurse practitioner, educator and mom of four, I have been in contact with a renowned allergist with Riley Children's Hospital here in Indianapolis. We are trying to work out the kinks of passing along medical records from our first allergist and/or pediatrician (what a challenge!) so that we can get a second opinion. I have no doubts that our original diagnosis is correct, but I am hoping to rack the brain of another expert so that we can all collaborate and put together the most comprehensible game plan possible. Come on medical records!!

Hopeful

I feel so lucky by the response that I have gotten from this blog so far!

Thank you to all of the moms that have reached out with helpful advice and encouragement. I can't tell you how hopeful it makes me when I hear about the little and BIG successes of other families who are further down this road. Please don't stop sharing your tips... I feel like we're in a brief "grace period" with Claire before we roll up our sleeves and test some foods. I want a PhD in Nutrition by the time we get started :)

I got a response from Dr. Sicherer from Mt. Sinai Hospital in New York. While he couldn't give medical advice via email, he did point me in a direction to find additional specialists with interests with food allergies in our area. He's also written a book, “Understanding and managing your child’s food allergies” with a section on FPIES. I hope Amazon gets it here in a hurry :) It might seem small, but I feel like these little breakthroughs bring us closer to good news.

As for the end of our "grace period", I still have to do a bit more research and seek out a GI doctor at Riley Children's and talk to our allergist about the ATOPY patch test before I can call it over. Dr. Sicherer didn't give me quite the answer that I was hoping for, while another medical journal article seemed more promising. Does anyone have any thoughts or positive/negative experiences with the ATOPY test?

Starting at the Beginning

I've found that, for better or for worse, "writing" my thoughts proves cathartic. This blog is for myself, as well as any of our family or friends who may be invested in our struggles with FPIES. It's also for anyone else who may be going through this rare and scary disease with a child.

We learned of Claire's diagnosis two days ago, just three days after her 6-monthiversary. I hope that this blog will have plenty of happy and triumphant stories to share, though I am aware that we have a long road ahead. I know that every child with FPIES fights a slightly different battle and every doctor has a little something different to say. I hope we can start a candid discussion so that we can ALL find an end quickly.

That said, here are some links to the very beginning of my research...
http://www.kidswithfoodallergies.org/resourcespre.php?id=99
http://pediatrics.aappublications.org/cgi/content/abstract/120/Supplement_3/S116
http://www.ncbi.nlm.nih.gov/pubmed/12671120?log$=activity
http://www.mja.com.au/public/issues/185_07_021006/all10609_fm.html

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.

FPIES & Proctitus

Wednesday, January 13, 2010

While I'm still catching my breath, I'd like to share one thing that has consumed us for the last month. Everything went from bad to worse in the last seven days.

At about 4 months of age, Claire had a couple of days worth of formula. She took it like a champ. A week later, she had another days worth of formula. Within days she began to show blood in her stools. After a visit to the pediatrician, we concluded she had an intolerence to cow's milk protein and we were going to stick with breastfeeding exclusively. Problem solved...

At 5 months of age, we started her on rice cereal. She ate ravenously for almost two weeks before I introduced her to oatmeal. She seemed to like that as well. Christmas in Tennessee came and I was ill prepared to feed her solids during our trip, so I didn't. We returned home and I gave her the oatmeal once more. A few hours after consumption she woke up in a pool of her own vomit, with swollen arms, purple little hands, and a splotchy rash covering her stomach and back. We paged the pediatrician at 11pm and he walked us through Benedryl and rehydration procedures. Shaking, we went to bed and woke up to our happy-go-lucky Clairey Lou Lou Ladybug.

I was nervous about giving her food again (Oatmeal was OUT), so I waited another week before giving her a mixture of sweet potatoes and rice cereal. She ate exceptionally well. Two to three hours later she woke up vomiting again, over and over. She got to the point of dry heaving. JP and I didn't waste a second paging the doctor again. He believed it was a stomach bug and reminded us of the proper rehydration procedures. My instincts told me it was the food, but I didn't know enough to argue with the doctor. We celebrated Christmas in Ohio without any solid food for Clairey.

We came home and I built up the courage last Tuesday to feed her breakfast (I wizened up after all of our late night scares). I gave her the same sweet potato and rice cereal mix as before. I figured that would tell us once and for all if it was the food or a stomach virus. She woke up from her nap and half an hour later the vomiting began. For nearly two hours we held our baby girl as she emptied her entire tiny body. She was pale, listless and clammy. I regret tremendously not taking her to the ER. I just thank God that she slowly came back to us after a little nap and small doses of breastmilk.

I owe an enormous thank you to Amber Bosler, who led us to the information about FPIES. She came upon it after her son suffered from vomitting after rice cereal. I spent hours researching and printing off information. Last Wednesday morning I went armed with food labels and my research to the pediatrician's office. We talked about a possible diagnosis and our options. The only piece of concrete information he gave me was a referral to an allergist... and a lot of support.

Clairey and I went to see our allergist today and our suspicions were proven true. Claire was diagnosed with Food Protein Induced Enterocolitis Syndrome and Proctitus. This is the most severe food protein allergy because she could have a systemic response (swelling, rash). Enterocolitis is inflammation involving both the small intestine and the colon, which is being triggered by rice, oat, cow's milk and possibly (unfortunately) other foods that we have yet to discover. We were prescribed an EpiPen for any subsequent episodes and strict orders to get her immediate medical attention as she's at risk for going into shock.

I was also asked if I would continue breastfeeding Claire or if I would like to get her on a specialized formula. I told the doctor that it was my intent to breastfeed through her first year, as the health benefits were important to me... and the cost savings of avoiding an exorbitantly more costly formula. That being said, I have been instructed to remove all rice, oats and cow's milk products (think milk, cheese, yogurt, butter, etc.) from my diet until further notice.

The silver lining in this nightmare is that Clairey has a very strong chance of outgrowing this syndrome by her third birthday. We'll test these trigger foods in the future in the safety of a hospital or doctor's office setting, so that (God willing) our episodes are behind us.

Clairey continues to be as happy and engaging as she's ever been. After the nurse gave her the dreaded "panel" prick to test for allergies, Clairey turned around and smiled at her. We are prepared, as a family, to keep her safe and sound from all that could put her in harm's way. Our little angel was a gift from God to teach us something about love and overcoming. Thank you, God.