Wednesday, November 3, 2010

The News From Our Little Corner of the World

We've lost Strawberry Shortcake and her friend, Razzberry Torte. They came to us via McDonald's Happy Meals and, tragically, they're missing. I have no idea when or where they were last seen. I must admit to having forgotten about them all together. Ellie, apparently, did not. For now, I've told Ellie that they're on a great adventure. That didn't stop her from melting down in a major way before her nap today but hopefully, it's bought me some time as I continue the man hunt. If you have any information as to their whereabouts, please contact the authorities.

These are the type of three year old dramas that tend to rule our world. These are the types of things that can make the difference between a happy three year old and a three year old who melts down throughout the day; frustrated, learning, growing and dealing with the world around her with all the tools currently in her emotional toolbox. I know that this blog is about Ginny's FPIES, however, Ginny's FPIES often seems to take a back seat as far as the 'action' in our household is concerned. Our FPIES food trials and my FPIES worries stay hidden behind the hustle and bustle and the never ending list of 'to do' items. We simply have to keep moving forward and when people say, "How are you?" there just isn't time for a real response. "We're fine!" Yup! Fine. My FPIES anxiety comes out mostly at night, when I should be sleeping. If G were failing foods, I'm sure this wouldn't be the case. If Ginny weren't so gosh-darned sweet and agreeable, I'm sure this wouldn't be the case. But it is. She is. When I pick up and drop off Ellie at pre-school, the little girls flock to Genevieve as if she actually has a gravitational pull. She takes in everything. She notices everything. She is content and full of easy, sweet smiles.

We went slow and careful and are calling bananas a pass. An easy, sweet pass. G ate a little bit of banana each day. Sometimes off a spoon, sometimes with her fingers and, eventually, just straight up eating bites right out of the peel. Now, like apples, she squeals when she sees one. It will be so nice to just be able to bring a banana along with us. No bowls or spoons or needing a microwave. And I know I've mentioned it before (a million times?) but bananas allow me to bake. They're the perfect egg substitute.

So....this week, Ginny is eating a mini quinoa-flour, banana muffin each day. Since those two major ingredients are already on our safe list, it's the other ingredients (honey, baking soda and canola oil) that are officially being 'trialed' as we do this. I like the muffins. I wasn't sure at first and G wasn't sure at first, but they've really grown on both of us. Not surprisingly, Ellie likes them too. Ellie eats everything. When I asked her, last week, what she wanted me to buy at the grocery store, she responded, "Avocado and star fruit." Huh? Seriously? I know you love avocado but starfruit? No cookies?(She knows starfruit only through a counting book we have.) So I bought some. She loved it. I thought it tasted kind of like perfume. She wants more this week.

That's all the news from our little corner of the world: Bananas, muffins, missing dolls and starfruit. And lots of laughing. Lots and lots of laughing. And dancing and singing. Not so exciting yet never a dull moment.

Tuesday, October 26, 2010

Ginny Ginny bo-binny-banana-fanna-fo-finny


Today we started bananas. I allowed G one minuscule bite from my banana as we sat down for breakfast. She wasn't sure at first but ended up thoughtfully mushing it around in her mouth and swallowing without much protest. I'm going to go slow with this one no matter how much G protests or demands more (i.e screams like crazy). Bananas are a more 'iffy' food. So far, so good.

And the millet... well that's a pass for sure. If G even sees the millet puffs (or mullet balls, as a friend calls them), she will refuse all other food. She loves to pick them up one by one. She loves to eat them. She loves to use her hands to mush them flat. She loves to feed them to everyone who gets close enough. This is a successful food for fine motor skills, G's belly and for Ellie - who loves to share this snack with her sister. Yay for mullet balls! ... umm... I mean millet puffs :)

Thursday, October 21, 2010

You Feed Your Bird Millet, I Feed My Baby Millet

I lied to all of you. Not intentionally, but I lied none the less. Perhaps it's not really a lie, but more of a misjudgment of my own state of mind. Apparently, I am not happy enough with the status quo. Apparently, I have not lost momentum. Surprisingly, even to me, we are moving forward with a food trial. Really.

I went into Whole Foods today intending to purchase more quinoa flakes because, as I mentioned in the last post, they have become a staple for G. While there, I discovered that they had quinoa flour in stock. I snatched it up. My heart began to race a bit. Quinoa flour is NEVER in stock there. I have some on the way via Bob's Red Mill online, but there it was right in front of me. They're always out. I felt like this was a good omen. I asked an employee, "You don't happen to have millet puffs, do you?" Indeed they did. I grabbed a bag. My arms were full. I had only come in for one item and was leaving with THREE foods my kid can eat.

Millet seems to be the talk of FPIES moms lately and was at the back of my mind for a food trial. It is in the cereals family but seems to be pretty safe. In addition, it's a dry, easy to eat, finger food. I have been itching for something to just put on Ginny's tray; something she can really eat all on her own, something we can put in a snack trap and drag along to the park. Millet puffs would fit the bill. They're small, but they're something! So late this afternoon (I know! I NEVER start trials late in the day!) I gave G some millet puffs. They taste kind of like sugar smacks (thank you John for figuring this out!) without the sweetness. G ate some and Ellie ate some and they both loved them and... now we're waiting. I need to just keep my ER bag packed at all times. I usually pull things together at the start of each food trial but this was so far from planned that I'm not at all prepared should things go poorly tonight. So much for just enjoying the every day milestones.

So, this is the start of the millet trial. Day one. When I was in high school I had a bird and it got millet sticks for treats. That bird LOVED the millet sticks. Now, I am feeding my baby millet. Does anyone else think that is a bit odd? I'm just saying....

My girls enjoying a millet snack together, like two birds of a feather!

Wednesday, October 20, 2010

Quinoa, Carrots and Goob. Oh My!

The first day of the quinoa trial - G covered in quinoa 'grains'

Apple picking - a day the WHOLE FAMILY could enjoy!

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.

Monday, September 27, 2010

Quinoa is still questionable

I started the quinoa trial last Tuesday and now, nearly a week later, I don't have an answer about this food. It's frustrating. I'm frustrated. I just want G to have more healthy food to eat. I want her to eat more so she can sleep more and I can sleep more. I want her to eat so I can stop worrying that I'll be nursing her until I'm 65. I want her to eat more so that she won't end up getting her nutrition via a feeding tube or a canned nutritional drink. We watched Wall-E with Ellie this weekend and I told John I wish we could all have all of our food 'in a cup' like they do in Wall-E. There wouldn't be crumbs. It would be quick to eat - and I just don't enjoy eating like I used to. I certainly don't enjoy eating in front of Ginny. Food seems to be a very combative enemy and we're at war daily.

Tuesday, September 21, 2010

The Good, The Bad and the Ugly Truth

The good?
Today we went to our weekly playgroup and the hostess did something incredible for us. She made her home a food free zone, excepting a small amount of time during which she set out snacks. Snacks were limited to the kitchen and the menu included apples and pears (among other things), both safe foods for G. After snack time, she vacuumed and had the kids wash hands and faces, making the whole house once again food safe for G. Really? R-E-E-E-A-L-L-Y? Really. Imagine a house full to the brim of raucous three year olds and a smattering of younger kids from 14 months old on down to just a few weeks old - that's enough work as it is... So this was.... amazing. This was certainly a change for all the little ones(they usually snack non-stop on Tuesday mornings) and not easy for the moms either, but they all did it without a gripe. They did it for Ginny so she could crawl around just like everyone else. She got to snack like everyone else (and LOVED gnawing on an apple slice). When the hostess let me know that she intended to do this, I cried. I'm crying again as I type. We have gotten together with this group of moms and kiddos since Ellie was 8 months old (about 2.5 years ago) and I cannot begin to express what an incredible blessing they've been in our lives or how much this effort meant to me. Hooray Momfia! Long live the Momfia!

More good? Ginny got quinoa this morning, and so did Ellie. They both loved it. Ginny wasn't so interested in quinoa on a spoon, but quinoa on her tray (and on her hands and face and in her hair) as a 'finger food' was a big hit.

The bad?
About an hour after eating (and covering herself and her seat and the floor in) quinoa, Ginny got the 'urp-y' hiccups. They were... liquid-y(?) and they made me very nervous. Although G was in great spirits for most of the morning, the afternoon brought more gas than I realized was possible for such a little child to pass and this evening brought an explosive, mucous-filled diaper. Wow, it's been WAY too long since I talked about poop. I think you've all let your guard down and wham! Here it is again.

The Ugly Truth?
I'm a nervous wreck. We may not end up in the ER tonight, but I doubt I'll sleep much and my hand will shake as I feed G quinoa again in the morning. The hiccups, the gas and the icky diaper are all bad signs. I am afraid. I'm not hopeful that this is going to end well. John said he's hopeful. I'll let him change the next diaper and see if it changes his mind.

Monday, September 20, 2010

It's pronounced KEEN-wah

This might be a long post. Sorry in advance. When I sit down to type I always think I'll be done quickly and have nothing to say but, somehow, once I get to typing and rambling, well.... if you're a blog follower, you know how it goes. I'm a fast talker and a fast typist and I just can't stop myself and hey, why not? Blogging is free! Your time, of course, is very valuable, so I give you full permission to skim through every post. I can't really afford to pay you for your time after all. If you have nothing better to do though.... well... grab a cup of coffee and enjoy.

Fun things first...
Apples are now on G's safe food list. She has had them fresh in a mesh feeder. She has had them frozen in a mesh feeder. She has had them as a cooked puree. She has had apples every day for a week. She has not had them in a box nor with a fox. She has had them here and there, but she seems none the worse for the wear. We now how three safe foods. Hooray!

Teeth! Last Friday (9/17) two more teeth made their appearance above G's gumline. I seem to remember reading somewhere that most kids get teeth in the same order starting with the bottom center two, followed by the top center two. Of course, Ginny doesn't like to be like other kids so her 2nd two teeth were two additional bottom teeth. I've got to admit that it's kind of funny to see a kid with only four bottom teeth grinning at you! But that funny grin won't last for long because the top center two teeth broke through today (They're HUGE!). Ellie was never bothered by teething but Ginny seems to have a tougher time (Maybe because those top two teeth are SO FREAKING HUGE). Poor kiddo. Perhaps 6 teeth is enough for now and she'll get a break. All these milestones are fun, aren't they?

Thursday, September 16, 2010

An Apple a Day Doesn't Land us in the ER

We started the apple trial on Monday, (pathetic start though it was) which means that we're now on day four and I have nothing to tell you - or at least nothing all that exciting.

G got the raw apple bits in the mesh feeder on Monday, about two teaspoons on Tuesday, about an ounce on Wednesday and another ounce this morning. I guess I've gotten pretty aggressive with the food trials. I'm not a patient person, am I? But nothing, absolutely nothing has changed. Well... you can see the difference in her diapers, but not a bad difference. No blood. No mucous. So I'm hoping. I'm crossing my fingers and arms and toes and wishing on stars and avoiding walking under ladders and PRAYING that apples will be safe too. I still feel very lucky. I still fear that our luck will run out soon.

Monday, September 13, 2010

A Day of Firsts

Time is marching on - and we're finally marching again too. Today was day one of Ginny's apple trial. No more delays. We will not be dissuaded from moving forward by fear of food any longer. (But to clarify, Ginny near most food still terrifies me.) So, day one of the apple trial. To be honest, we kinda half-assed it. Yes, I just swore in my blog. Is anyone reading for whom this is problematic? (Is anyone reading this at all?) Didn't think so. The thing is, we really meant to officially start the trial for apples just like we had done for the pears and spinach. John bought three bags of apples (Yes, John went to the grocery store. No, it doesn't often happen. Yes, it rocked! No, I have no idea why he bought three bags of apples. Yes, if she fails apples you're all invited over for home made apple sauce so we can get rid of it all!) and they were just waiting for us to make them into a sweet, saucy puree. But... it was a busy weekend. The kids were wiped. We were wiped. Every moment had been packed and it got late before we knew it. John decided he would try to make a puree from uncooked apples with the skin on. Yes, I told him it wouldn't work. No, it didn't work. Yes, we tasted it and it was pretty foul. To peel and cut and cook and portion... we didn't have it in us.

So, how did we half-ass it? I just gave Ginny two little chunks in her mesh feeder this morning (at about 9:30 a.m.)and let her have at it. No measuring. She was a little irritated to be honest. When she gets pears this way they're ripe and soft and easy to mush. The apples were a little more challenging. She worked and worked and had some success and... so far, so good. Tonight though, we're on the ball. As of 9:58 p.m. we have one tray of apples nearly ready to come out of the oven and another waiting to go in. We'll have more applesauce than we know what to do with in no time.

Ginny wasn't the only one moving forward today though. Ellie had her first day of preschool. Hooray! I am both shocked and proud that I did not cry. Ellie didn't cry either. My little social butterfly was more than up for the task! She had a minor meltdown before leaving home when she started to desperately repeat, "But I don't know how to do preschool." None the less, she did preschool just fine. As far as we can tell, a game of duck duck goose and the snack were her favorite parts.

And just because they're so cute... here are some pictures of the girls....

Ellie on her first day of preschool. I picked out the outfit and she, of course, picked out the shoes.

Ginny wearing a princess skirt and eating a princess wand.

Saturday, September 11, 2010


This post is all about waiting....

I've been waiting to start a new food trial. Why? Because I'm scared. Our first two foods were both safe foods. I feel like that was pretty lucky. I'm feeling like I shouldn't press my luck. I'm waiting because I'm too scared to move forward.

Have you been waiting for more news? Waiting for an update? I'm sorry if I've disappointed.

We were waiting last night... after G had her first accidental ingestion. Ellie was enjoying an apple. She KNOWS she can only eat at the kitchen counter or table. She knows it, but she's three. She went to her room to play and I thought she left the apple behind. I put G down to play with Ellie in her room, left momentarily and returned to find G licking/gnawing the apple as best she could. Truth be told, she looked so damn happy with that apple in her mouth/hand that it was almost heartbreaking to take it away. It was almost heartbreaking - and I snatched it away quick as lightening and felt the breath whoosh out of my chest just as fast. I called John as he was on his way home from work to tell him the news. We put the girls to bed and waited. And waited. We have no idea of knowing how much/how little apple (if anything) that G got, but the worry was huge. I accepted long ago that accidental ingestion at some point was inevitable - but I didn't think it would happen quite so soon. It's hard not to beat yourself up. I should have watched Ellie closer. I should have could have would have should have..... We waited. And nothing happened.

So, it's our hope that all the waiting will end on Monday. I intend to buy and prepare apples for our next food trial and start on Monday morning. Perhaps the lack of reaction to the apple gave me courage? Perhaps the other moms who share their stories online are inspiring me? Perhaps my own exhaustion is pushing me forward because WOW does a 10.5 month old who all but exclusively nurses eat a lot and eat often. Somehow, the joy of days without a food trials soured into days of agitated avoidance. It's time to stop waiting. Apples are in season.

Thursday, September 2, 2010

Just in case you wanted to know...

We saw Wonder Woman today for Ellie's required pre-school exam and Ginny's very belated 9 month (she's 10 months old) appointment.

Ellie is holding strong in the 50th percentile for weight at 30.4 pounds and continuing on in the tradition of both the Baloun and Toussaint families in the 80th percentile for height at 3' 2 & 7/8". As she did when Ellie was an infant, Wonder Woman declared her to be 'perfect.'

Ginny... we think she's perfect too, just as she is :) She is in the 40th percentile for weight at 18 pounds, 7 ounces. She has dropped off her previous growth curve, but only slightly and actually, Ellie did when she was G's age too. Besides, G still has rolls of chub on her wrists and ankles and what I call 'fat tan' around these rolls. LOVE IT! At 2' 4.25" tall, she's in the 60th percentile for height.

One one hand, this appointment reassured me that Ginny is still growing strong. On the other hand, it shattered the calm I had yesterday and now I'm feeling like I really need to get back to food trials. Poor John, I'm probably going to talk his ear off about it tonight, trying to figure out what to feed G next. Hope you all have more fun in store for you tonight than John does!

Wednesday, September 1, 2010

A day without food trials

Days without food trials are like... extra sunny days with a cool breeze and an ice cream cone. No worries. No measuring. No bag ready to head to the ER just in case. Today is like that, despite the overcast skies. Today, Ginny can just eat her safe foods and enjoy them and I can just feed her and enjoy watching her eat.

And speaking of eating, THE nicest thing happened to us the other day. We had a play date with friends (I'm talkin' 'bout YOU Tina) and the mom brought along freeze dried pears she had purchased at Costco as a snack for her kids. She said, "Ginny can still have pears, right? I thought she might be able to eat these." No added ANYTHING. Just freeze dried pears. So Ginny could eat them - and did. She snacked right along with the other kids. Ginny might not notice the difference yet, but I sure do and this - her getting to be just like the other kids- had me choked up. Furthermore, that my friend thought of this, knew what Ginny could eat, it was just so nice and thoughtful. Makes me choked up again thinking of it. There is so much I took for granted before that I just don't anymore. I have wonderful friends. Oh, and this might just get me to go out and purchase a Costco membership :)

We never made it to day 12 with the spinach trial, but called it safe around day nine. The thing is, we bought a big 'ol container of spinach and it steamed/pureed down to 11 teaspoons. So, when we got to feeding her 2 teaspoons of spinach at a time, it was like giving a 9 month old a pretty decent sized spinach salad. What 9 month old needs a spinach salad every day? So, now she gets a bit of it at a time (for the nutritional value) and when we have more foods, it will be great to add in for flavor and extra nutrients.

What next? I don't know. Although lots of kids do, Ellie didn't have meat until after she was a year old so I'm thinking of holding off on the lamb. Maybe quinoa? Maybe a pit fruit? Those are supposed to be pretty safe. Or maybe the white potatoes I was planning on initially. Partly, I'm thinking of changing our plan because of the patch test results. If soy was, in the end, a/the big reactor (that spot is STILL red and rough), perhaps it's just soy? Maybe rice (and maybe other grains) will be safe for Ginny. Maybe. Maybe not. I know that John thinks we should just avoid all potential major triggers. But I'd like to consider trying eggs.... again, maybe after Ginny is one.

Tomorrow we head to see Wonder Woman for a ten month check up (or a way-behind-schedule-nine-month-check-up). I'm very anxious to see where G lands in her growth percentiles. Surely, if we could just measure her based on the size of her feet, she'd be off the charts! So, for now, happy eating. If you don't have one yet, go get yourself a mesh feeder. Ginny sure seems to like it :)

Wednesday, August 25, 2010

No spinach today.... just a rant

Ginny has a cold. She also has a low grade fever. I don't think it's FPIES related, by the way, just a summer cold or teething or (let's hope not but...) even an ear infection coming on. But, she has a cold so she has little interest in eating anything. Not even pears this morning. Sigh....

Bad for Ginny, good for me. Why? It gives me a break from writing about Ginny's eating to go on a good 'ol fashioned rant. That's right. Have a seat, sit back, grab a drink (I like coffee and Bailey's - but it's a bit early in the day for that) and listen to me rant about doctors and hospitals and medical politics....

I'm feeling a little alone with FPIES. I have loads of online support and we love Wonder Woman and Boy Wonder is alright but still... an expert or veteran, in person, would rock. John thinks we don't need one. I disagree. I want advice or input I can really lean on, ya know? Something with solid credentials behind it so I don't feel like I'm losing my mind. Someone to answer questions and reassure us and maybe even tell us those things that we don't even know that we don't know. (Read it again, it will make sense eventually.) So I've been searching and searching and searching and, unfortunately, striking out.

Tuesday, August 24, 2010

Our 2nd Food Trial: Spinach, Day 7 (Is it really only day 7? And a revision of the patch test results)

Okay, let's see... Thursday, 1 full teaspoon of spinach. Friday, 1 full teaspoon of spinach and Saturday and Sunday we were camping with friends so... no spinach. How do you bring frozen, pureed spinach camping? We couldn't figure it out so, instead, we brought whole, fresh, ready to eat pears and G enjoyed them via the mesh feeder.

As a matter of fact, G enjoyed the pears AND the camping - we all did! The weather was great, the company (four other families camped with us for a total of ten adults, five 3 year olds and three 6-10 month olds) was truly enjoyable, the bugs were fun to look at and weren't biting us, the s'mores were sticky and the beer was cold. We've known all the 'older' kids since they were all about 8 months old and it's been so fun to watch them grow -and fun now to watch them with the younger kids. Sort of. I love each of them as I love my own kids but, to be honest (sorry Momfia!) I did have some moments of panic this weekend. On one hand, it was so sweet to see Owen wanting to share a kiss with Ginny - but seeing him do it when he had a milk mustache was a little scary. Olivia keeps asking for a baby sister of her own and is wonderful with G, sharing kisses and hugs- and almost her English muffin. Yikes! They're just kids. Ellie is the same way and we've explained repeatedly how food can make Genevieve sick. Part of me has accepted that there will accidental ingestion someday - and the other half of me continues to watch Ginny like a hawk; swooping down to remove the slightest bits of food from her grasp. I know I must seem crazy. Those two halves of me will, most likely, be at war for years to come. I hope you'll all forgive me for this bit of madness. It could be worse I suppose. Haven't you seen the crazy cat lady from the Simpson's? I'm not THAT bad.

Thursday, August 19, 2010

Our 2nd Food Trial: Spinach, Day 4 (and some test results...)

This morning we upped the quantity of spinach for our trial to one teaspoon. To be honest, Ginny was a little less interested in the spinach this time (and you know I don't blame her), but she ate it just the same. I believe that her lack of enthusiasm is partly my own doing. Last night, as she sat in her high char while the rest of us ate dinner, I went a little crazy. Again. It's so obvious when she fusses while we eat that she just wants food... and it got me thinking (and I just want to feed her)... We had pears perfectly ripe for making baby food so, I jumped up, cut off a chunk of ripe pear, put it in her mesh feeder, and handed it over. Although she wasn't sure about this at first (and I had a slight moment of hesitation and fear wondering if she would react differently to fresh pears than she did to roasted, pureed pears), she eventually waved her arms around, laughed, smiled, mashed up the pears with her two teeth and gums, and enjoyed every strained morsel. So I think, having had fresh and yummy pears, spinach might have been a little less appealing this morning.

As soon as the spinach was gone, we were out the door for an early morning appointment with the allergist to check on the results of Ginny's patch testing. The patch was dramatically removed and revealed... wait for it.... nothing. Absolutely nothing. At the most, when we looked at it again later today, the soy area is slightly red. Slightly red. Milk and eggs showed nothing. NOTHING. Soy is SLIGHTLY red. SLIGHTLY. I know that these tests are not considered incredibly accurate or conclusive but I'm so tired of not knowing so much that I thought this test would tell me something. I got nothing.

I had an incredibly long discussion with the allergist about what this means and/or doesn't mean or what it tells us or doesn't tell us. I worried that this means that FPIES isn't the right diagnosis for Ginny. I considered just feeding her rice cereal to see what happens so I know SOMETHING. I considered speeding up/shortening all her food trials. But, at the end of the day, this changes nothing. I will change nothing. We know nothing more. I am simply more frustrated. Angrier at this beast. Stuck crawling forward at this snails pace wondering when we'll hit a land mine and trigger another reaction. I just wanted something that felt more concrete. I got nothing.

At the most, this gives us hope that we might consider trialing milk and eggs sooner after G's first birthday. I should be happy for these results I guess. At the best, this could mean that rice is her only big trigger. I should feel happy. Ginny is healthy and happy. Looking at her and the rolls around her wrists and ankles, no one could possibly guess what she's been through. Instead, I feel beaten today. It's exhausting when it's difficult to simply feed your child.

Wednesday, August 18, 2010

Our 2nd Food Trial: Spinach, Day 3 (WITH PICTURES!)

There isn't much to say. Spinach, day 3. 1/2 teaspoon in - and all over her face and hands - followed by an ice cube in her mesh feeder so I can stay at the table and get Ellie to finish eating too. One happy mom. Two happy girls. Oh, and some pictures....

Ginny's patches - can you see the M, E and S for milk, eggs and soy?

Yes, Ginny LOVES spinach!

Just because... I'm sharing this picture of my Eloise. Friends gave her this WONDERFUL hand-me-down princess bike. We got it all tightened up, added training wheels and she is in absolute HEAVEN. She is a great rider - a little too fearless for my taste- and, of course, loves to wear the oh-so-stylish helmet she picked out herself. Crazy little fashionista. No, she probably doesn't NEED a helmet just yet. Yes, she saw it in the store, HAD to have it and wore it until going to bed that night.

Tuesday, August 17, 2010

Our 2nd Food Trial: Spinach, Day 2 (and a visit with the allergist)

I thought that yesterday was a fluke. I thought that today, when Ginny saw the spinach again - and tasted the spinach again- she'd change her mind. Nope. I buckled her into her seat and had to walk back to the kitchen to get her 1/2 teaspoon of pureed spinach, and as soon as I turned my back without having fed her, she went NUTS. The girl just wants to eat. So she wolfed down her bit-o-spinach in record time and followed it up with an ice cube in her mesh feeder while I wolfed down my cereal and coaxed Ellie through her sleepy, painfully slow, easily distracted morning meal.

Once again, so far, so good. No scary diapers. No hiccups. No crazy gas or cramps. No reflux and, best of all, no vomiting. It would be amazing to start our food trials 2 for 2. It would be amazing and, to be honest, all the credit would go to the moms who have done this before us. The list of foods we're trying first- pears, spinach and lamb - have all been suggested by other FPIES moms. I love Wonder Woman and am really growing to like Boy Wonder more every day, but it has been the other FPIES moms I've 'met' via internet communities that have educated us, answered questions, calmed our fears and kept us from feeling crazy, lost and alone. So, our hats are off to all of you. We thank you. You rock :)

In addition to the spinach trial, we are also in the midst of a patch test for Ginny. Monday afternoon we visited Boy Wonder who applied small, watch battery sized 'patches' of soy, eggs and milk to Ginny's back. The patches will stay there until Thursday. (Our internet is down at home and I'm using the internet at a friends' house and don't have my camera so can't upload the picture of this now, but will soon!) As far as I can tell, the patches don't bother Ginny in the slightest. She doesn't even seem to know they're there -although Eloise is BEYOND crazy curious and dying to mess with them. This test is by no means foolproof and, recently, we've read that the results are more like 50% accurate instead of the 95% we'd heard before, but I'm still anxious to see the outcome. If any of the patches leave horrific marks, we'll know that food should absolutely be avoided. Should the skin not react at all, or react only slightly, we may consider trialing that food. Or not. Or maybe. Really, I don't know. In some ways, I just felt like we needed to keep making forward progress and trying SOMETHING to work out pieces of this FPIES puzzle.

So that's the news. If Comcast has us up and running tomorrow (are any of you laughing because you have Comcast and know it sucks too?!) I'll post pictures of Ginny's patches. Now, all together, everyone wish my Dad a Happy Birthday. Happy Birthday Dad! I'm hoping he got more than a 1/2 teaspoon of spinach to celebrate.

Monday, August 16, 2010

Our 2nd Food Trial: Spinach, Day 1

This weekend was... well...a weekend. When it's just mom and the girls, the girls nap. We go places and do things and have fun but, for the most part, we organize these things around making sure that G gets one solid nap each day and Ellie gets some down time too. When it's the weekend and Dad is home, all bets are off. A BBQ with friends, a movie in the park that didn't even start until 8 and the airshow were all fun, but left the girls absolutely wiped out.

So... Ellie slept until 8 (!!!) this morning and, although G woke at 6:30 to nurse, she went back down easily and slept until 9:30. That's right, I said 9:30. When she did finally wake up, I was ready for her! No pears. Not today. Today, I was ready with a 1/2 teaspoon (yes, we increased our 'starting' amount) of pureed spinach. (I decided that, at least for this first day, we should feed her the new food exclusively and besides, we're out of pears and need to make more tonight. Oops.) She gets SO excited just being buckled into her seat. Each time, as I'm buckling and she's squealing and crazily waving her hands around with pure, unrestrained joy and anticipation of food, I feel a little sad. I would just LOVE to let her dive into something, let it cover her face, get in her hair... and she would love it too... I can't, at least not yet. Maybe someday soon.

But today, she can have spinach. Honestly, unless it's mixed in with other foods (like cheese!) or other greens, I'm not a huge fan. Am I alone in thinking it tastes a bit like dirt might taste? Anyhow, I thought feeding Genevieve spinach might be a struggle but she proved me wrong. It was only 1/2 of a teaspoon but she loved every last bit. So far, so good. No puking, no sign of anything bad. She's a smiling kid who pitched a fit when the spinach was all gone. Good girl :)

And just a word about the spinach itself. I bought a huge container of triple-washed, organic baby spinach. Huge. We steamed it, pureed it and ended up with... 11 teaspoons. Maybe I should just down spinach in this condensed form to get the nutrients too?

Later today we're heading to the allergist to start the patch testing for milk, eggs and soy. I'm excited and nervous all at once. Fingers have been crossed. Prayers have been said. Toys have been packed to keep Ellie entertained while we're there. Wish us luck.

Friday, August 13, 2010

Our First Food Trial: Pears, Day 10 (I've gone hog wild!)

So I write every day and you complain. I don't write every day and you complain. I just can't win! Okay, no one really complained but I was feeling the weight of your expectations on my shoulders. Really, I was.

So... We're on day 10 of pears. We were serious and precise about 1/4 of a teaspoon for three consecutive days. We were mostly seriously and mostly precise about 1/2 of a teaspoon for three more days. We were excited and not as precise about 1 teaspoon for two and a half days and then last night, we just went hog wild. Ginny had her 1 teaspoon of pears for breakfast and, at dinner time, when she started fussing because we were eating and she wasn't (She pitched a FIT each time we finished feeding her and it made me SO sad), I jumped up from the table, excitedly grabbed my newest purchase and went for it. I bought one of those little mesh feeders and used it to give her a chunk of frozen pear puree to chew on. I was psyched! Let her eat pears! Alas... she didn't. She didn't like the little feeder - at least not this time. She did eat the pears eventually though - defrosted and served to her on a spoon - and she was so happy. So. Very. Happy. Just to get to eat something when she demanded it. Made me happy too :)

I know it's only day ten, but I'm going to call this a pass. Hooray! Ginny has her first safe food! We have monitored every facet of her well being in a nearly obsessive, compulsive manner and have seen little that's even worth mentioning, so I think it's a safe thing to do. No rash. No diaper rash. No reflux. No gas. Best of all? I think that her sleep has actually improved. Last night she slept from 8 p.m. until 2:45 a.m. (waking once at 11:45 p.m. but easily soothed back to sleep by Dad) and then again until 6:30 this morning. A-MAZ-ING. You're waiting for it, aren't you? You want to know about her poop? Well, she's eating pears and breast milk. What do you think it looks like? (For those of you not obsessed with these things, think of it this way: pears work like prunes). As a matter of fact on Tuesday, while at a restaurant with friends, she had a poop-splosion that was a challenge for even three seasoned moms to clean up (Thanks Eleanor and Kim for gettin' my back!). But... poop-splosions happen and, since it didn't keep G from smiling, I'm not worried.

So what now? Well... I'm heading to the grocery store soon to buy pears. More and more and more pears to bake and puree and freeze and feed feed feed to my Little G. And, while I'm there, I think I'll be buying some organic spinach as well. I'm not quite sure just how I'll feed this to her (or what day we'll start that), but I'll figure that out ASAP and John and I will do a big batch of food this weekend. Having this first food as a pass has left me feeling very optimistic for a change. Can you tell? Progress, even just the smallest step, is still progress - and I'm thrilled to finally have some progress. Now I'm hoping for momentum too!

And, of course, on Monday we'll see Boy Wonder to start the patch testing for eggs, milk and soy. I'm sure you'll hear more from me after that...

Friday, August 6, 2010

Our First Food Trial: Pears, Day 3 (With a little bit-o-good news thrown in)

I told you I wouldn't write every day, and I won't. Really, there isn't much to say about the food trial at this point, but I keep thinking of other things I should tell you and I know that if I don't just do it, I just won't do it. Know what I mean? And quick, short, easy to digest posts are better than those novellas I used to write, right? Right.

So, to get it out of the way.... another 1/4 t. of pears in this morning at about 8:30 (G slept in) and all is well. I could give you all the details - at home, we're documenting every diaper and burp and fart and the slightest of redness on her skin in the greatest of detail - but I'll spare you... with one exception. We're documenting the diapers and I was quite surprised to find a special treat in there yesterday: grass. It's so tough to be outside with G because she love love LOVES to pick and attempt to eat handful after handful of grass. I forgot about this stage. I thought I had been rather successful in keeping it out of her mouth. I guess I was wrong. Does this count as a 'passed' food for our FPIES list?

Now onto the other news... Boy Wonder called us yesterday, quite out of the blue! After further research (and conversations with the doctors at CHOP, I think) he is now willing to do a patch test for eggs. Hooray! Eggs would be such a nice, versatile food to have on our safe list if all went well and we actually decided to trial it. So, all I have to do is find powdered egg (apparently, using this gives the most accurate result) and bring it along to our appointment. I can do that.

Furthermore, I thought I'd fill you all in on our long term plan for food trials. From what we can tell from our research and reading, the foods that most often show up on 'safe' lists for FPIES kids are pears, spinach and grass fed lamb so, after pears (I'm obviously feeling very positive and optimistic at this point) we'll do those. I am considering trying some form of potato before we do spinach, because E happily ate potatoes with spinach mixed in, but never spinach on it's own and, to be honest, the thought of pureed spinach doesn't really appeal to me either. So... pears, potatoes (not sweet because those are really a legume, I think), spinach and grass fed lamb. If we passed all of those, we would have a fruit, a veggie, a starch and a meat at the end of just 16 short weeks. Just so you know, I have eaten lamb in gyros and on limited other occasions, but have never made it at home so I have some research to do. It will be an adventure for sure!

I think that's it. Tomorrow Genevieve will get a 1/2 teaspoon of pears from Daddy for breakfast. I actually think he's pretty excited to get to feed her. Now I'm off to play with some dinosaurs, mermaids and space shuttles. Yes, they're all friends and they play together on Sesame Street in Ellie's world. Got a problem with that? :)

Thursday, August 5, 2010

Our First Food Trial: Pears, Day 2 (A Slight Change of Plan)

No, I'm not going to blog every day about our first food trial. We'll be trialing each food for two weeks, so that would get incredibly dull, wouldn't it? Go ahead. Nod your head. Don't feel bad. It's true.

But I am writing this morning... 7:45, another 1/4 teaspoon of pears in. I won't be increasing the amount yet. Thanks to Joy and other moms all over the FPIES internet world, we have a small change in plans. We'll feed G the same amount for 3 days and, should she tolerate it, we'll double that amount, stay there for three days, etc. Part of me just wishes I could serve up a big 'ol bowl of pears and let her dig in and part of me wishes we weren't even at the 'feeding' stage yet. Most of all, I'm just glad we haven't needed to head back to the ER!

And just so you know, I was right on with the tooth prediction. This morning we're celebrating the arrival of tooth #2 (bottom right). Hooray! Oh - and more than anything, we're celebrating a 3rd night of incredibly improved sleep.

Wednesday, August 4, 2010

Our First Food Trial: Pears, Day 1

At about 7:30 this morning, Genevieve ate about 1/4 of a teaspoon of homemade, organic pear puree. Since then she's nursed, napped, played with friends, nursed again and is now napping some more, right on schedule. She seems to be just fine. Tomorrow, we'll give her 1/2 of a teaspoon. There really isn't anything else to say. So far, so good. Don't believe me? Here's a picture of Little G after she finished her itty bitty breakfast:

Awww... isn't she just too cute? She has one tooth on her bottom left side now and is working on the second bottom one. I'm sure we'll see it any day now. Go G!

Tuesday, August 3, 2010

As I get ready to start our first food trial...

As I get ready to start our first food trial tomorrow (pears!) my head is racing. I think that when people have a manic episode, it might feel a lot like this. I can't stop thinking about FPIES FPIES FPIES. I've gone over things a million times and can't find a reason not to do this. We've done all the prep we can. As I go around and around reviewing all the FPIES info stored in my noggin I've realized that there are some things we haven't told you and, as long as I can't stop thinking FPIES FPIES FPIES I might as well type those things out for you. It's better than driving John nuts anyhow, right?

So here's what you don't know yet....
1. Although we did get an (oddly belated) FPIES diagnosis from the doctor at Comer Children's Hospital, as well as a confirmation of this diagnosis from Boy Wonder, Ginny's case has always been a bit unusual. Although first time reactions for allergies and intolerances are often not immediate (and sometimes don't even occur until a second ingestion or sting or skin contact, etc.), Ginny ate rice cereal on a Thursday and didn't vomit until a Monday night. That's kind of a long time. It has stuck with us and with doctors as something odd, and certainly makes John worry, occasionally, that Ginny still hasn't been correctly diagnosed. So... I was pouring over the FPIES chat boards last night (someday, I will devote an entire post to praising these incredible, intelligent, caring women!) and found something that feels a lot like a light bulb to me. The first time we went to the ER, John was convinced that G was puking because he had let her drink too much bath water. At the time, I called him crazy. The ER doctors assured him that this was not a possibility. Now? the time we were using Burt's Bees Baby Wash which, it turns out, is chock full-o-soybean oil. If she does react to soy and he let her drink lots of water via the wash cloth (yes, I know that is really, really, really gross), well then... that might be our missing link. Wow! Crazy, right?

Monday, August 2, 2010

The Here and Now

So let's see... last I left you we had been to the allergist and learned that Ginny is 'regular' food allergy free and I went on a little dairy binge. I'm not gonna lie to you, it was yummy. I ate dairy and eggs (in reasonable quantities, it really wasn't a binge) Monday night, and all day Tuesday, Wednesday and Thursday and, by Thursday, Ginny was a rashy, rashy mess. Why? Your guess is as good as mine. I cut dairy out again and the rash cleared up. I slowly re-introduced it again and.... nothing. Nothing at all this time. Remember, she could have no 'regular' allergy to milk, but still be intolerant to it and reacting or, not have either an allergy or intolerance but it could still trigger an FPIES reaction. Only time will tell.... But for me, for now, I'm back to eating anything and everything (and, to be honest, because I'm exclusively nursing a 9 month old, I'm eating a lot of everything). Just an aside, should you ever REALLY want to lose some weight fast, go dairy and egg free.

Can you see Ginny's rash?

Thursday, July 29, 2010

A Tale of Three Doctors, Part 3 (of 3!)

First, let me encourage all of my faithful readers... You're close! You're sooooo close to being caught up to present day in our saga and then, I promise, my posts will get shorter. I think. I mean, why wouldn't they? And, after all, no one is forcing you to read this. Seriously, only five of you are even officially blog 'followers' so it's not even like I'm crowding your inbox. Jeez. Really.

Anyhow... I'm not going to recap this time, I'm going to jump right in. We were heading to an allergist. How did we find one? How did we get in so fast? By now, you should know the answer. Yup, Wonder Woman did it again. We should send her and her staff a Christmas gift or chocolates or maybe magic lassos. Didn’t Wonder Woman have a magic lasso? Don’t think we can afford to give away invisible planes….

Monday, July 26, 2010

A Tale of Three Doctors, Part 2

July 1 at 3:30 p.m. was our next 'big appointment.' We were heading to Comer Children' Hospital at the University of Chicago. Once again, the waiting list to get in was long and, once again, Wonder Woman fought to get us in sooner. Furthermore, she had actually gotten to talk to a doctor there who assured her that their staff was familiar with FPIES. As a matter of fact, there was a doctor there who was very interested in allergies and food intolerances who would be great for us to see. He had JUST diagnosed another case recently. Hooray! Once again, I was incredibly hopeful. Can you guess where this is heading?

We filled out the paperwork, didn't wait long, were incredibly impressed by the facility itself, and were charmed by the nurse who took all Ginny's vitals and gave Ellie loads of Disney Fairy stickers just for being the big sister. After the nurse, we saw a resident who took a medical history (very thorough) and... Enter the doctor. We talked at length. He gave Ginny an exam. And... it's time for a tangent.

Sunday, July 25, 2010

And Now, Back to the Story: A Tale of Three Doctors, Part 1

So, back to the story.... A recap? Okay, I'll recap.... one incredibly fussy kid, 2 ER visits, lots of vomit, no answers, googled 'baby vomits rice cereal,' discovered FPIES and Wonder Woman agrees, got it?

Next, we started the search for more doctors. More doctors you say? Yes! Wonder Woman agreed with me that Ginny has FPIES, but also admitted that she'd never heard of FPIES before so, obviously, wasn't an expert. FPIES is not common. We needed experts. First, we needed a Pediatric G.I. We wanted someone to confirm this diagnosis (or even disagree with us while giving us a different answer). In addition to confirmation, we needed someone who knew enough about FPIES to be willing and able to give us a letter directing treatment should we end up in the ER again. (The thing is, when you go to the ER you sign a letter giving doctors 'consent to treat.' It's not carte blanche to do whatever they want, however, when a kid comes in looking like Ginny did, they're always going to want to X-ray her first and follow a certain path of diagnosis and what we'll really want is treatment ASAP- simply an IV and, depending on Ginny's condition, Zofran. Besides, if Ginny kept getting X-rayed this regularly she was bound to start glowing). Finally, should we run into any of the other issues that FPIES kids encounter, we wanted a G.I. familiar with her case to help treat her. So, first we started to search for a G.I...

Saturday, July 24, 2010

Come on already! Just spit it out. What is FPIES?

For your reading pleasure, I have spent all sorts of time linking the best FPIES info I could find online to this blog so, for the most detailed, medical, official information on FPIES, read those. For those of you not obsessed with my kiddo's medical condition (dreaming about it at night, researching non -stop, bothering doctors via phone and email... wait, that's just me), here's the down and dirty.

FPIES stands for Food Protein Induced Entercolitis Syndrome. (I know that means nothing to you. Not long ago it meant nothing to me either.) FPIES is on the furthest end of the food intolerance spectrum. Some people are lactose intolerant. These people can't digest dairy products because they lack umm.... well, they lack something enabling them to break down and digest dairy. I'm not lactose intolerant so I don't know what it is, but doctors do. Other people live gluten free because they also lack something that doctors could tell you all about which enables them to break down and digest gluten. If these people eat the foods they shouldn't, my understanding is that they feel pretty miserable: gas, reflux, cramps, rashes, diarrhea and/or blood in their stool (I don't think I'll ever post without mentioning poop or vomit).

FPIES is kinda like those things but, instead of FPIES kids reacting to dairy or wheat or soy, they react to proteins. Protein is pretty much in everything we eat. When an FPIES kid eats food they shouldn't they might have some or all of the above reactions but, in addition, their body tends to reject the food. Sustained, violent, projectile vomiting. (There is a very graphic link to a YouTube video of a little boy having an FPIES reaction if you REALLY feel the need to see this). Some kids, like Ginny, vomit until they're in shock. Unlike the other food intolerances (spell check doesn't think that 'intolerances' is a word, by the way), doctors can't tell you all about why this happens. There is shockingly little information available, appallingly little awareness in the medical community and endless conflicting opinions on every aspect of this beast. As a matter of fact, the only way to diagnose FPIES is by observing reactions (and going through the tests to rule out other conditions). Fun fun fun. But there is one good thing, one VERY GOOD THING about FPIES and it is this... Kids grow out of it. It might take 3 or 4 or 6 years, but they do grow out of it.

Friday, July 23, 2010

Once Upon a Time: How it All Began

The beginning is the best place to start so here it is, from the very beginning. This post is going to be long partly because there is a lot of ground to cover to catch you all up to present day, and partly because I ramble. And just a warning, I’m going to talk about vomit, constipation and poop so you may want to put down your snack before continuing on.

It was a sunny day in May (honestly, I don’t remember if it was sunny but hey, why not?) and G was nearing 6 months. She was cute, growing strong and healthy and..and… I’d like to go on an on with adjectives about how sweet she was but I’d be lying. She didn’t sleep at night. She never cried, she screamed. And when did she scream you might ask? Every time I set her down. No, I’m not kidding. I love my kiddo but honesty is the best policy and the truth is, she wasn’t easy.

Thursday, July 22, 2010

First, a Disclaimer

So now I'm blogging. Bloggety blog blog blog. But before I really get going, some disclaimers:
  • I make no claims of professionalism or perfect grammar. I know of at least two friends whose fingers will be itching to grab their red correction pens as they read this. Yes Nidhi and Courtney, I mean you. I use too many commas and I use them in the wrong places. I use '...' and '-' all the time in inappropriate places and don't plan to stop doing it anytime soon.
  • I think I'm funny. If you don't, stop reading. Now. Hmm... I see you're still reading....
  • I am not speaking for anyone else. Not even John. I didn't even tell him I intended to blog until after I posted this. Oops.
  • I'm blogging for two reasons: First, so I don't have to call a million people and update them regularly on Ginny's status. Yes, I mean you. No, it doesn't mean I don't love you or that we won't talk on the phone anymore. Really. Take a deep breath and get over it. Wow, doesn't it feel better to let go of that anxiety? Second, I'm blogging just in case our story and the info posted here will help other parents struggling through this with their little ones. The waters of FPIES are murky, hard to navigate and incredibly frustrating. I have relied heavily on other parents for FPIES info and this is a way to start paying it forward.
  • I intend to ramble, ruminate and make fun of all sorts of people, places and things.
  • I won't mention anyone by name except the members of my own immediate family (and the two women noted in the first bullet point. Oops.). I don't intend to talk about you anyway so don't worry.
  • Our FPIES journey began in May 2010. Today is July 22, 2010. There is a lot of history to share. I plan to post our story chronologically as time allows, and will eventually get this all up to date. Hold your horses. I'm sure I'll keep you on the edge of your seat!
  • I am not a medical expert. FPIES isn't fully understood by the professionals, much less by me. If you're looking for FPIES information, I hope that our story is helpful only by comparison.

Just felt I should let you know.