2012 - Year in Review

So here it is, 12:30am on the first day of 2013.  I was sitting back earlier today and reflecting on how much my life has changed in the last 365 days.  One year ago I was the mom to a "normal" five month old.  One year ago on Janary 2, 2012 was when FPIES was first introduced to us.  It's when the violent, profuse, projectile vomiting went from being a random stomach bug and an isolated incident to a chronic, life altering disease.  It's when my CutiePie started her journey from chunky monkey to borderline Failure to Thrive.  It's when the fight began.

Here we are a year later.  A year older, a year wiser, a year smarter, a year stronger.   In 2012 we saw nine different doctors in seven different fields (A pediatrician, 2 allergists, a GI, a Chiropractor, an OT, a Speech Therapist, and 2 Nutritionists).  We failed eight foods.  But we made it through the year. So here it is - 2012 in pictures.  

January 2012
Six months old
17lbs, 4oz  25 3/4" tall

February
Happy Valentine's Day!

 

March
18lbs 10oz, 26" tall

April
Learned to crawl

May
10 Months Old

June 2012

July 2012
ONE YEAR OLD!
19lbs, 12oz

August
Learned to walk

September

October
20lbs 4oz

November
19lbs 6oz

December
HATES the snow!  

What a difference a year makes! 

Breastmilk vs Heavy Cream....

A while back I mentioned that CutiePie was considered a candidate for the Feeding Therapy at our local Children's Hospital.  Our appointment was about a week and a half ago (yeah, yeah, I know - I'm a slacker at updating the blog.... Get over it).  It was.... well....  interesting.  We got there bright and early at 8am without having fed CutiePie any breakfast so she would be nice and hungry so the team of specialists could watch her eat breakfast.  So we got comfy in a little exam room and in came an Occupational Therapist, a Speech Therapist, a Nutritionist, and a Med Student.  I set CutiePie up with her much anticipated breakfast and we got down to business of watching her not eat.  It couldn't have gone any better.  I spent the entire day before in the kitchen making a ton of food she wasn't going to eat.  She had chicken nuggets, cereal, shredded cheese, a blueberry muffin, some blueberry yogurt, a sippy cup of breastmilk, and a box of vanilla milk.  As starving as she was, she picked up one piece of cereal and about three pieces of shredded cheese and that was it.  She wouldn't touch any of the rest of the food, and then she picked up the milk box and sucked it dry.  That was it.  After that she started throwing food on the floor, trying to feed everyone else in the room - typical meal-time behavior for her.  I almost wanted to laugh when they told me it was hard to evaluate how she moves food around in her mouth and how she chews/swallows if she doesn't eat any food.  Um, yep.  If she would actually eat then we wouldn't need Feeding Therapy!  Then they asked me about a million questions about meal times, our daily routines, etc.  We talked about all the modifications I've already tried to see if it would help motivate her to eat (moving high chair location, booster seat vs high chair vs kid sized table chair, eating with tv, playing with play foods, different plates/cups/utensils, different meal time schedules, etc, etc, etc).  Then they left us there while they went to do some talking and researching to see what they could find that might help us.  One of the ladies commented that I obviously had done my own research and was well informed about the most common suggestions (I even came up with a couple things they had never seen/heard before) so that combined with them not really being able to fully evaluate CutiePie I think had them kinda stumped.

After a little while they came back to tell me the following things:
-  Speech and OT said they didn't know if there was really anything they could do to help since she doesn't really seem to have any physical limitations keeping her from eating.
- The nutritionist recommended starting her on a daily multivitamin, and even brought a print-out of a brand she thought might be safe.  However, the vitamin contains citric acid and xanthum gum which are both corn derivatives.  Supposedly it "doesn't contain any corn protein" so it "should" be safe, but I'm thinking probably not for CutiePie since she is sooooo sensitive to corn.   Her only other suggestion was.....wait for it.....  think about weaning off of breastmilk (CutiePie still gets about 12oz of breastmilk a day in a bottle) and giving her the milk boxes (which are low-fat milk) with some heavy cream mixed in.  She started in on an explanation about how my milk isn't providing CutiePie with as much fat/calories as the milk/cream mixture would, but it was at this point I started to just smile and nod.   Heavy cream is some fatty, creamy goodness but um.... how in the world could it be better than breastmilk?!?!

Heavy cream is from a cow's breastmilk and has calories and protein and fat, and that's about it.  Maybe a little bit of vitamin A and a little Calcium.  My breastmilk is from a HUMAN source.  It's totally unprocessed, fresh, raw and what God intended babies to eat.  It has all sorts of vitamins and minerals, not to mention the anti-bacterial and anti-viral properties.  No way on God's green earth are you going to convince me that giving CutiePie an extra 12oz of cow's milk mixed with heavy cream is going to be an appropriate substitution for my milk.  ::sigh::   That being said, CutiePie does drink one of those milk boxes a day and I have been adding heavy cream into it, but until she is at a complete diet outside of my milk I am not going to stop giving it to her!  Okay, rant over.  Back to the appointment.

After all that was said and done, we saw a GI doctor.  He suggested starting CutiePie on Prevacid with the thought that maybe her reflux symptoms were causing her digestive tract to be damaged to the point of being uncomfortable which leads her to not want to eat solid foods.  Makes sense to me.  He also said that the typical course of treatment for kids who are diagnosed with EoE (they have talked about the possibility that CutiePie may also have EoE) is to scope them, then start them on a ppi like prevacid for six to eight weeks, and then scope again.  So by starting the prevacid now, if it gets to the point they want to scope her for EoE, we would only have to go through it once.   We also talked about starting her on a probiotic as well as trialing some Duocal to add more calories into her diet.  Duocal is a powder you can sprinkle on her foods to add calories, but he warned it is made from corn sugar.  So we are holding off on that for another day - maybe after the holidays.  He also suggested some ongoing occupational therapy to try and help CutiePie eat more food and a wider variety of foods.  He wants to see us back in January to evaluate her again and if she is still not gaining weight (and actually, her weight dropped to 19lbs 6oz for this appointment) then he wants to talk about scoping her. 

Since then we have been doing the prevacid (getting it approved by our insurance is the topic for a whole different post.....) and it seems to be doing SOME good.  She is sleeping better at night - no more coughing fits, no more random vomiting, no gagging at night and she is eating better, but still not great.  She seemed to go through a little growth spurt last week and actually hit her calorie goal two days in a row, but now is back to a more pre-prevacid normal eating pattern.  I still haven't heard from the OT department to get her started with that, but with the holidays approaching I wonder if it will just have to wait until after the first of the year.  So the everyday mundane task of recording every bite of food CutiePie puts in her mouth continues. I just wish I had a problem with making sure I'm eating enough calories each day!  The amount of chocolate I eat is directly proportional to the amount of stress I am encountering, and FPIES and everything that goes along with it is STRESSFUL.  So if anyone needs a Christmas idea for me, some nice yummy dark chocolate would be much appreciated!  ;)

An Ode to Asparagus

Asparagus, asparagus, how I love thee
You are so delicious, oh me, oh my, wow-we
But why, oh why do you hate CutiePie?
Are you just trying to make me cry?
All that smelly vomit all over my chair
It didn't smell any better when it got in her hair.
Or how about that horrible red diaper rash?
Is it just that you and her do not mash?
So until a new day, my sweet veggie of green.
When the breastfeeding is done you know what that means -
We can be reunited again you sweet little tree
And rekindle our love, asparagus and me.


Okay, so maybe I don't have a future career as a poet.  :)

All-in-all Thanksgiving was a super happy great holiday.  Our travel plans ended up being cancelled because CutiePie's daddy had to work, but we had a wonderful weekend with my side of the family instead.  CutiePie was the center of attention and I think she ended up eating her weight in cheese (cheese and crackers are the snacks of choice with my family!).  However, on Friday we sat down to a absolutly delicious steak dinner cooked by my grandmother complete with my favorite veggie - asparagus.  I don't eat it very often (mostly because I have no clue how to cook it!) and I kinda pigged out on it.  I even gave CutiePie a spear to play with.  She didn't eat it  (no surprise) but she did lick it a couple times.  Honestly, I didn't even really think much about it.  She has done fine with every other green veggie we tried, and I didn't think she'd eat it anyway but Friday night she was up ALL night screaming.  By Saturday morning she had the worst acid poo diaper rash I've ever seen and about 90 minutes after having a bottle of my milk Saturday afternoon the vomiting started.  The only thing we could think it may have been was the asparagus.  There hasn't been anything new in either of our diets.  At first I thought it might be the return of the stomach bug, but she vomited for 15ish minutes, emptying her stomach and then she was fine.  Nothing else.  Have I mentioned how much I hate the smell of vomit? And let me clue you in on a little secret.  They say asparagus makes your pee smell funny, but I would argue that it makes vomit smell worse too. 

Feeding Therapy and the Smell of Failure...

One step forward, two steps back. 

The last time I updated I mentioned that CutiePie was being refered to the Feeding Therapy team at our local Children's Hospital.  The hope is that they can evaluate why she isn't eating enough and help us increase her daily calorie intake and help her have a balanced diet outside of my milk.  Sounds like a perfect match, right?  Well I got a call from the intake nurse to schedule our appointment and the next available evaluation appointment isn't until FEBRUARY.  That is a solid three MONTHS from now.  AND after talking to the nurse it is common for insurance companies to deny coverage, and even if they do we have to a pay a co-pay for EACH specialty she will see that day - up to five different departments.  Our specialist co-pays are $40 a pop, so $40 x 5 specialties = $200 FOR ONE VISIT!   ::sigh::  And what the heck are we supposed to do for the next three months?  The nutritionist we saw at Children's last week suggested I download an app for my phone called My Fitness Pal and keep track of everything CutiePie eats to make sure she is at least getting close to the 950 calories/day she needs.  The ap is actually really cool - you can just scan the barcode of anything you eat and it automatically puts it into the diary.  MUCH easier than the notebook I used to keep for CutiePie and WAY easier to track the number of calories.  Well, after a week of tracking and using all the tricks the nutritionist gave us, and feeding her bowls of strawberry ice cream every evening she has yet to even reach 700 calories/day.  I'm beginning to wonder if this little girl is any way genetically related to me.   The other night for dinner she had on her plate a spoonful of sunbutter, Cheecha puffs with cream cheese, shredded cheddar, watermelon, and a strawberry milkshake.  I cringed giving it to her because it goes against everything I've ever learned about what to feed a toddler, but all the ate was the Cheecha puffs anyway.  ::sigh::   At least we have three months to get her to eat before having to spend a small fortune for some professionals to watch her not eat. 

And then we had yesterday.  She was eating so well all morning.  She drank all her milk, ate several snack throughout church service, came home and actually ate lunch.  It looked like she might have her best calorie day yet.  I gave her a bowl of strawberry ice cream in the afternoon, put her down for a nap, and left her with daddy while I went out for a very rare, much needed dinner out with some girlfriends.  I was gone for about 3 hours, so I expected her to be excited when I got home.  I came in the door and immediately knew something was wrong.  Daddy said she had been crying since she woke up from her nap, and as I went over to pick her up she immediately opened her mouth and puked.  And puked.  And puked.  Daddy had given her a bottle full of cow's milk with her dinner and it all came back up.  Plus everything else she had eaten all day.  It was curdled and smelly and EVERYWHERE.   However, after her tummy was empty she was back to laughing and playing and she was happy as could be.  Totally suspicious.  She played with me for a couple hours, drank a bottle of my milk, and then we snuggled up in bed and went to sleep.  Two hours later I woke up to her puking all over me again.  And our bed.  And our pillow.  I used to be a teacher.  I taught anywhere from infants up to 1st grade and I've dealt with my share of kids with a stomach bug.  You would *think* the smell of vomit wouldn't bother me anymore, but I swear I have the weakest tolerance on the face of the planet.  Poor daddy ends up having to be the one to clean it up.  (I married an AMAZING man who doesn't mind either!) So after another shower and new sheets/blankets/pillows we finally got back to sleep.   This morning she is acting fine, but refusing any type of solids.  So far today she's had a bottle of my milk and about 5 Cheecha puffs and 2 small noodles.  I am *hoping* it is just a virus and not some reaction to something she ate, but either way we can't at this point afford for any set backs with her eating.  The last time she had a puking reaction it took her SIX WEEKS to eat anything other than Cheecha puffs.  And back then I was making a heck of a lot more milk than I am now. 

On a positive note though, after four loads of pukey laundry my house is finally starting to smell normal again.  I think I may bake some chocolate chip cookies this afternoon though, just to push it over to a pleasant smelling place rather than just an okay smelling place.  And I'm thinking maybe I deserve a cookie or two (or twelve!) right about now!

Another Day, Another Doctor...

Yesterday was an exciting day for CutiePie.  We started off the day by casting our votes for the next President and then it was off to Cincinnati Children's Hospital for a consultation with a new allergist.  The hospital itself is so intimidating to me.  Just floors and floors and building after building of doctors and sick kids.  Just walking in the doors made me want to cry.  It was a whole host of mixed feelings for me being there- anxiety for CutiePie's appointment, hope for some real answers, guilt that I was there with a mostly healthy little girl, sadness for the very very sick kids that I was sharing that building with, and just an overall feeling of frustration that all those doctors within those walls can do NOTHING to make my baby better.  ::sigh::

All that aside, the allergist appointment itself was fairly productive.  We were there for three long hours, and most of that time was actually spent with the doctors/nurses.  Our doctor wanted to talk about each of CutiePie's severe reactions in detail as he typed it into her chart right then and there.  He asked a million questions and we talked about a million things related to CutiePie's issues.  Some of the things we talked about gave me some hope that he knew what he was talking about, but honestly nothing he told me about FPIES or the treatment was new news.  I do feel like he listened to me a lot better than our old allergist and I feel like he actually cared about CutiePie and her quality of life.  But I think that's the frustrating thing about FPIES.  There's not really anything anyone else can do for her.  It's just a day by day get through it kind of disease.  Try something and if it doesn't work try something else.  At the end of the day it is up to us as parents to make the decisions for CutiePie.  For example, he told us that because she didn't have the horrible scary awful vomiting with oats that she likely was okay with them.  Considering it coincided with crazy bad eczema and mucusy lime-green poops which cleared up as soon as oats were out of her (and my) diet, I don't really care if he thought oats was a trigger for her or not.  I'm not feeding them to her. 

After we were done talking to the allergist, he suggested having the dietician come in there and talk to us and evaluate CutiePie's diet to see if she could suggest some foods/supplements/whatever that could help her have a more complete diet and increase her calories so she might actually gain some weight.  I think talking to her was more helpful than seeing the allergist.  She gave us some great tips on increasing her calorie intake and gave us a goal for CutiePie to get about 950 calories/day.  Right now she is getting about 350 calories/day from my milk, so we have a lot of work to do.  We also talked about weaning her off of my milk and onto regular whole milk, which I think we will start thinking about after the first of the year.  She also suggested we get CutiePie on the waiting list for the feeding therapy team at Childrens.  I am waiting on a call from them to make that happen.  Hopefully that will help her get over some of her food aversions which will in return help her get more, get more calories, and gain some weight.

Our original reason for visiting was to talk about the possibility of CutiePie also having an Eosinophilic Gastrointestinal Disorder (EGID).  The allergist said it was unlikely she has both FPIES and an EGID, but he did say he has seen kids with FPIES end up getting an EGID diagnosis later in life.  He kinda came across as thinking a kid may outgrow FPIES and then develop an EGID.  However, he did say with her poor growth it may be wise to have her scoped and evaluated.  He wants our pediatrician to reevaluate her growth and then possibly refer us to a GI specialist.  I think I want to hold off on that for a couple months though and give us the chance to work with the feeding therapy and the dietician to try and see if we can kinda get her to put on some weight and eat a little more before we take any steps in any other directions.

So tonight I am doing some high calorie FPIES friendly cooking.  Up tonight - spinach dip to go with her CheeCha puffs.  Because you know, adding spinach into some cream cheese and oil and mayo totally gives it a health-food feel!  ;) 

CutiePie with FPIES and EE?!?!

Today was Cutie Pie's 15 month well baby check-up.  I've been on edge for her appointment for at least a week.  I knew walking into the office that they were going to say she hasn't gained enough weight, but even though it wasn't a surprise it was still frustrating.  She weighed in at 20lbs, 4oz which means she's gained a total of 6oz in the last three months.  Not enough.  Her growth chart curve is plummeting and she has gone from the 90th percentile in weight down to like 10th percentile.  Luckily her height and her head are right on the same curve they've always been. 

I think I've said this before, but I love our pediatrician.  He sat and talked to me for a long time about Cutie Pie and her FPIES and the problems we've had getting her to eat.  He is so understanding and honest and tries so hard to be helpful but it was painfully obvious that we are still alone in our fight to figure her out.  He even admitted that he doesn't know a lot about FPIES and doesn't really know what to tell us to help.  However, we did come up with a plan of action of sorts.  First step is that he wants us to be seen by the allergy department at Cincinnati Children's Hospital.  Although their allergy department is notorious for dismissing FPIES, they are the leading hospital in the country for EGID's and our pediatrician thinks some of Cutie Pie's symptoms might benefit from taking a little closer look to at least rule out Eosinophilic Esophagitis (EE).   If the allergy department at Cincy Children's isn't able to help us, he suggested maybe looking into the resources available at either Jewish National Hospital in Denver, CO which has a renown allergy department or possibly Children's Hospital of Philadelphia which is pretty well known in the FPIES community. 

Reflecting on our discussions, I'm full of conflicting feelings.  On one hand I feel relieved to know we at least have a plan and that our pediatrician is on our side and he made it clear he was dedicated to helping us figure Cutie Pie out.  On the other hand, I'm terrified of the possibility of another diagnosis that has no real treatment.  And then there is the prospect of explaining Cutie Pie's history all over again to another set of doctors.  It's exhausting.  I feel bad for having to put her through more tests not to mention all the expensive co-pays and medical bills - and that doesn't even include the possibility of traveling across the country to see yet ANOTHER set of doctors. 

But somehow God always seems to laugh at my frustrations and He calmly reminds me that He is in control of this.  It must be pretty amusing to see what He sees all the time.  Sometimes I wonder what we all look like to Him running around making plans and trying so hard to do our own thing.  I was doing some reading today and here is the verse I came across: 

Luke 12:23  "For life is more than food, and the body more than clothing." 

I get it God.  I'm so blessed to have such a happy, goofy, beautiful little girl in my life. 

Just an Update

Yeah, yeah, yeah.  I know - it's been a while.  I've been thinking about updating this blog for several weeks now, but the truth is I really don't have anything new to write about.  Here is the short version of the last month and a half:

Trialed wheat.  Passed, I guess.  Stopped supplementing with formula in her bottles, Cutie Pie started walking and stopped eating, lost a whole pound (according to our at-home scale), started with the formula in her bottle again. 

 Now you're up to speed.  In all seriousness though, it has been a very frustrating month.  Although there is really nothing new to report, it's because I feel like we aren't making any progress! She did pass wheat, but (like everything else) she won't eat it.  Yesterday was a cold, rainy, yucky day so big brother and I made some sunbutter chocolate chip cookies.  They were healthy and DELICIOUS.  No sugar, whole wheat flour, dark chocolate chips, sunbutter, all sorts of goodness.  Cutie Pie had fun carrying one around with her, but I don't think a single crumb made it into her mouth.  We've tried crackers, pretzels, pancakes, muffins, and she pretty much refuses all of it.  The only thing she has developed an affinity for is goldfish crackers.  She asks for them by name - "feeeeshhhhh"  but if you give them to her she might lick a couple of them and might eat the tail off of one.  I think she just likes the salt. 

Cutie Pie is almost 15 months old and still is pretty much exclusively breastfed (well bottle fed with pumped breastmilk).  For example, tonight for dinner she ate one grape and one McDonalds french fry.  And that was the biggest meal she ate all day.   It's hard to get much trialing done when you can't get her to eat anything.  I am beyond frustrated and I have no clue where to go from here.  ::sigh::  And she is loosing weight now too.  She was up to a whopping 21 pounds on our scale here at home, but just last week I weighed her again and she was back down to 20.0 pounds.  :(  That meas we are at a total gain from her 12 month check-up of 2 oz.  TWO ounces.  We go back to the pediatrician in a few weeks at which point he told us last time that if she isn't eating he wants her to be evaluated by an occupational therapist for her eating issues.   I feel like a total failure here as a mom.  I mean seriously I must be failing her somewhere along the line if I can't even get her to EAT.  If she is this set against eating now, what do I do when she is a teenager and thinks she's fat?  (Although at this rate that is never going to happen....)  Plus, my family likes to eat.  I'm from a family full of foodies.  Is this just the universe's idea of a cosmic joke giving me a child that doesn't like food?   I'm not seeing the humor, Mr. Universe.... 

Maybe it isn't FPIES after all....

I'm in a weird place these days.  It's like all of a sudden I am doubting everything that has happened the last year.  We are in such a good place with Cutie Pie's FPIES that it is making me think that maybe, just maybe, it has all been a coincidence.  Is that possible?  Maybe all that baby spit-up was actually just spit-up.  Maybe those puking episodes were just a fluke.  Maybe all that night waking/crying was just from teething.  Maybe I'm just crazy and have been stressing myself out and dragging CutiePie around to doctor appointments and slapping food out of her hands and pulling pieces of crackers out of her mouth for nothing.  Maybe she really is just a "normal" baby.  Maybe.  Or maybe we just are managing it well right now.  Either way, I am happy to be in a good place.  CutiePie is sleeping all night in her own bed as long as she has two paci's and her pink kitty blanket.  She is gaining weight now that she is getting her breastmilk bottles fortified with formula (according to our scale at home she has gained 1/2 a pound in the last month!).  She is even starting to eat some real foods.  Not much, but definitely better than a couple months ago!  Today for lunch she ate some shredded cheese, a couple bites of chicken lunch meat, and a couple bites of fresh peaches.  For her, that's a feast!

This week we started a wheat trial - scary stuff, but like I said, I'm in a comfortable brave place right now!  CutiePie doesn't have a good track record with grains, but I wanted to make sure I did a wheat trial before I wean her off my milk.  Right now we are on day 3, and so far so good.  We've been using Matzo crackers to trial it (only ingredients are organic wheat flour and water.  Have I mentioned how much I love Jewish foods?!!?).  I'm not sure she's really eaten enough to get a good enough feel to call it a pass yet - and it's only been three days, so there is still plenty of time to fail.  But she's still sleeping, still having normal diapers, still not crying/screaming in pain, so I'm thinking we are headed in a good direction!  I have visions of giving her pancakes topped with real butter.  Cheese and crackers.  Bread.  I feel like if she does pass wheat she will be able to have a "normal" looking diet.  Even more normal than big brother's diet was like at her age (he was allergic to eggs, milk, and peanuts).

Now if I could just get her to EAT those normal foods, we'd be in business!!

Dairy is a......

PASS!!  WHOOHOO!!

It's been a week or so since I last posted because it has been a happily uneventful dairy trial.  I was so certain dairy was going to be a fail and I had braced myself, but it never happened.  Cutie Pie is getting a scoop of regular ol' Similac formula in her bottle twice a day and doing just fine.  She drinks it, she enjoys it, and she does great with it! 

I almost feel like I am a mom to a "regular" kid.  Feeding Cutie Pie has all of a sudden become so much more fun.  Earlier this week I made her noodles (Ge-Fen potato pasta, but they look, feel, and taste like the regular stuff) and then I thought "hey, I could add butter to these!"  It was exciting.  Of course, Cutie Pie didn't actually EAT the pasta with butter, but she could have if she wanted to!  She is, however, enjoying shredded mozzarella cheese.  Only mozzarella - apparently cheddar is evil and she expresses her distrust of it by immediately throwing it on the floor and giving me dirty looks if I attempt to put it on her plate.   I even gave her a glass of chocolate milk one night for dinner.  Again, she didn't actually drink it (well, she sipped some out of her cup and the spit it right back out) but she COULD have it if she wanted to.  Now I just need her to WANT to eat.

The downside of adding formula in her bottles is that it seems to make her fuller than just breastmilk.  From what I understand, this is a totally normal thing.  However, she is now down to only four bottles a day, which is only 20oz of breastmilk (plus 2 scoops of formula, so the equivalent nutritional addition of 4oz). I can't decide if I think it is better for her to get 20oz of breastmilk + 4oz of formula, or 25oz of breastmilk.  Part of me says screw the formula, breastmilk is waaaaaaaaaaay better, but the other problem we were running into is her iron levels were still on the low side at her last check-up and we decided to cut out her iron supplement.  Since we cut out her iron drops her whole attitude has improved.  She's sleeping 10-11 hours straight at night consistently plus taking a 3ish hour afternoon nap and she is generally just more agreeable during the day.  Those iron drops were apparently really causing issues in her tiny body.  So I think I will just keep up with the formula in the bottles to get some more iron into her little body.  Plus, since I am able to freeze an extra 5oz of milk a day my freezer is filling up pretty fast.  I've donated my freezer stash several times this past year (I think it totals around 1500oz) and it feels good to know my milk is helping to feed other hungry babies!  I'm teaching Cutie Pie to share early. ;) 

Up next on the food trial agenda is pineapple.  I'm sure she isn't going to really eat them, but with some canned fruit being packaged in 100% pineapple juice, it would be nice to have something like a simple fruit cup that we can pack for on the go snacks.  Again, not like she would actually EAT the snacks but at least she would have that option. 

Dairy, Day 1

We've decided to bite the bullet and jump into a dairy trial with Cutie Pie.  Momma is TERRIFIED.  We've been talking about it for a while and the last two weeks I've been trialing dairy in my diet (oh sweet glorious dairy) and it is going great!  Cutie Pie is still sleeping well, playing well, and symptom free!  WOOHOO!

What finally pushed us over the edge to try it with her was our lately pediatrician check-up.  Cutie Pie is at 19lbs 12oz which is only the 30th percentile for weight.  At her four month check-up she was in the 90th percentile.  That is a BIG drop.  And since she isn't doing well eating her real foods, our pediatrician suggested that we try adding a scoop of formula into her bottles of breastmilk to try to up the calories and nutrition she is getting.  Hopefully that would also help with her anemia, so it sounded like a good thing to try.  Instead of just jumping to the elemental formulas, we figured we might as well just try out good ol' milk-based Similac.  I'd much rather spend $25 for a can of formula instead of $80 if we can help it.....

Yesterday we went for it.  At around 4:30 she had 5oz of breastmilk mixed with half a scoop of formula.  She drank the whole bottle, so that is good (at least we know she actually got some to her tummy vs what we encounter when we try to give her solids!!).  Right about two hours later I had a very grumpy girl on my hands.  She was crying, wanting to be held, and just in a bad mood.  But, no vomiting, no diarrhea, no rashes, etc.  After a while she perked back up and was fine the rest of the night.  It could have been so many things that were making her mad, and then she slept for a whopping 12 hours last night (that NEVER happens), so today it is on to a full scoop of formula in one of her bottles.  Eventually we will try to make it up to a scoop in each of her bottles (she gets 5 bottles a day, so 5 total scoop would be the equivalent of about 10ounces of extra formula in her belly, or about 200 calories). 

Our pediatrician also told us that at this point he isn't terribly worried about her having trouble eating and swallowing foods.  Obviously it is an issue because her weight is dropping off, but as far as developmentally he doesn't usually worry until around 15 months.  So when we go back in October we will re-evaluate and then possibly refer her to speech or occupational therapy to help her develop more muscles in her jaw.  Until then we will just keep working hard to get her to eat the few things she can!!

In other news, Cutie Pie is TALKING!  She has her first real, understandable by everyone word.  It is.... drumroll please...... baby.  She crawls around all day saying "Oh baby!"  It is the cutest thing in the world.  She's also developing a form of "look" and "this" except it sounds more like "oook" and "dish".  Forget momma and dadda - we don't even get mama and dada babbles.  Of course, Big brother gets "buddabuddabudda."  ::Sigh::  this girl has a serious case of misguided priorities!

Birthday Bonanza!

Cutie Pie's birthday was a BLAST!!  My little girl turned one - I can hardly believe it.  Where did the last year go? 

As a last minute addition, Cutie Pie's mamaw decided to come up for the weekend and bring along Cutie Pie's uncle and a few of her cousins, so we had quite the full house to celebrate.  My goal all along was to make everything we had at her party FPIES friendly, and I'm going to be quite vain for a moment and talk about how amazing everything was.  Delicious.  There were hardly any leftovers - and considering four of the guests were picky eaters between the ages of 11 and 13, I'd say delicious would be a unanimous descriptive for the food.  And then there was the cake.  I ended up deciding against the watermelon "cake" that I originally planned and created a coconut macaroon cake with chocolate ganache frosting.  It was amazing.  It tasted like one giant mounds candy bar.  Incredibly sweet and chocolaty and delicious and messy.  We got some amazing photographs of one intensely chocolatey Cutie Pie.  I cried while taking the pictures because they were pictures I never thought I'd get to have from her first birthday.  What did we eat you ask?  Well let me share some pictures and recipes!  These were all definitely keepers!!

First up: 

Coconut Chicken Nuggets

I overheard Cutie Pie's uncle (age 11) tell someone else I had dipped the chicken in sugar.  He could taste it.  They did have a slightly sweet aftertaste that was really quite nice.  I made two huge cookie sheets of these nuggets and I think I was left with about four at the end of the party.  

Ingredients:

*I'm guessing on the measurements.  I'm more of a pinch-of-this, handfull-of-that kind of cook*

Boneless, skinless chicken breasts (I had two big packages) cut into chunks

1/2 c Coconut flour

1 c unsweetened shredded coconut

coconut oil

4 eggs

1/4 c coconut milk

1.  Preheat oven to 350 and lightly coat cookie sheet with coconut oil (I use a pastry brush)

2.  Mix eggs and coconut milk in a small bowl.  (I really didn't measure the milk - just poured some in until it looked like the right consistency to coat the chicken)

3.  Combine coconut flour and shredded coconut in another bowl.

4.  In small batches, dip chicken nuggets into egg mixture and then bread with coconut mixture and place on cookie sheet, making sure to spread out as much as possible.

5.  Bake for 20 minutes.  

Fruit Kabobs

 

1.  Cut up safe fruit.  Put on a stick.  We did watermelon (cut into E's and 1's with cookie cutters), peaches, blueberries, and raspberries.  

We also had safe potato chips and a cold green bean and potato salad from this recipe which even my granny, a self-professed green bean hater, enjoyed. 

But then there was the big finale:  

Coconut Macaroon Cake with Chocolate Ganache Frosting

(adapted from a recipe by François Payard)

  

 This stuff was RICH.  And in now was was it a low-calorie, low fat food.  The coconut milk I used has 22grams of fat in one serving, and there were 3 servings in the can.  That's not even including all the sugar and chocolate.  I'd be afraid to know the actual nutritional content for this delicious wonder-food.  

Ingredients:

1 2/3 cups coconut cream or 1 can GoldenStar brand coconut milk  (if going for the coconut cream, get a can of full-fat coconut milk and let it sit in the fridge overnight to seperate and gently scoop the cream off the top.  If I were you, I'd just go for the GoldenStar brand.  I found it at Wal-Mart in the Asian food section)

1 bag Enjoy Life Chocolate Chips

coconut oil

4 eggs

1/2 tsp salt

1 1/2 cups sugar

10oz unsweetened grated coconut (I found 5oz bags at Kroger, so 2 bags was perfect!)

1.  Heat coconut cream in a saucepan until barely boiling.  As soon as you see the first bubbles, take the pan off the heat and add the whole bag of chocolate chips.  Mix until smooth.  Cover and refrigerate for at least an hour.  It would probably be better to go more like 2-3 hours.

2.  Preheat oven to 350, line jelly roll pan with parchment paper and then coat paper with coconut oil.  

3.  Prepare a double boiler.  (This really isn't hard.  Just put an inch or so of water in a saucepan and get a good heatproof bowl that will sit on the top without touching the water.  I use a round pyrex bowl).  While the water is heating, mix the eggs, sugar, and salt until smooth.  

4.  Set bowl over water and wisk until egg mixture is warm to the touch.

5.  Remove from heat and beat until the mixture has tripled in volume (about 5ish minutes). 

6.  Fold in all but 1 cup of the grated coconut.  That extra cup will be used as a garnish.

7.  Spread coconut mixture onto the pan in as even a layer as possible and bake for 20-25 minutes.

8.  When cool, flip cake onto a parchment paper lined work surface.  I then used the top of a cup to cut two round circles for the layers of Cutie Pie's smash cake, but you could do the layers however you want.  For the everybody cake I used two big rectangles.  

9.  Use the refrigerated ganache to spread between the layers and then to top the cake.  Press remaining coconut onto the sides of the cake and refrigerate until fully set (mine sat in the fridge overnight).  

It sounds pretty complicated, but in all reality it wasn't that bad.  I've said it before - I am NOT a chef and just look at how much Cutie Pie enjoyed it:

It was a lot of cooking to get everything ready, but we had a great time.  I just still can't believe my little Cutie Pie is already a year old.  Time needs to hurry up and slow down already!  It doesn't seem like a year ago I was bringing home a not-so-tiny 8 1/2 pound newborn.  One year, a million questions, a hundred frustrating days of trying to figure out this FPIES thing later I have one beautiful, stubborn, happy TODDLER!  AHHH!

The Allergist Drama Continues...

My last post was about how annoyed I was at our allergist.  Well today, the drama thickened.  I got home from taking Cutie Pie and Big Brother to a baseball game (Have you ever taken two small children to a baseball game alone?  One that contains free ice cream and candy?  No?  Well try to imagine the state of my nerves by the time we got home....) and innocently checked the mail.  I saw I had a letter from the allergist's office.  The last time we went he kindly wrote a very nice letter to our pediatrician about the things we had discussed and the current plan of action, so I thought this new letter might be interesting considering I don't think he heard a word I said at our last appointment.  I was right.  I'll just let you enjoy the drama and read it yourself.  I'll put my comments in red.

Dear Todd, (Seems like he should address our pediatrician as "Dr." but whatever)

I wanted to update you on Cutie Pie.  She continues to be breast-fed but has tried some solid foods.  Her mother says that Cutie Pie does much better when she (the mother) avoids dairy, corn, soy, peas, rice, oats, sweet potatoes, and quinoa in her own diet while breast-feeding.  Currently, her mother describes Cutie Pie as a very picky eater who primarily eats watermelon, avocado, potato and chicken with each meal.  (This paragraph wasn't so bad)

Physical Exam - on exam she is happy and healthy appearing and has a normal HEENT and clear lungs (Amazing how he could tell this by never coming closer than the door of the exam room.  He must have super-sonic hearing to hear her lungs over by the exam room door).

Diagnosis - 
1.  Peanut allergy
2.  FPIES - rice creates severe reactions but other grains have not been fed directly to Cutie Pie (except he misspelled her name).  However, when her mother eats corn, oats, or quinoa Cutie Pie has significant problems.  It is unlikely she has FPIES for all these foods but since they seem to bother her we will not advance them just yet.  (Except that she has been fed oats and quinoa and both caused an FPIES reaction.  Corn causes vomiting through my milk which sounds like FPIES to me too.  No mention of any other trigger foods.  If he listened to a word I said or read the paperwork he photocopied and put in her chart he would have known this.)     

Plan - at this time I recommend the following dietary precautions.
1.  Strict avoidance of all peanut and tree nut products.
2.  EpiPen Jr available for potential IgE mediated reaction to peanut.
3.  Continue breast-feeding for as long as desired (No mention as to what to wean her to.  At the appointment he told me there was no need for me to breastfeed her and I needed to wean her to cow's milk)
4.  I instructed her mother to cautiously introduce cheese and other cow's milk products such as yogurt.  She will also try to advance soy, beef, and turkey in Cutie Pie's diet.
5. At follow-up in 6 months we will discuss advancing other foods.  Until then she will avoid rice, sweet potatoes, corn and other grains such as oats and quinoa.

I will keep you up to date with any significant changes.  Thank you for the opportunity to consult in Cutie Pie's care.

Sincerely,
Dr. I-Never-Listen

I just don't know where to go with this.  Should I reply back to the allergist?  Just drop-it?  Find a new doctor?  I feel the need to write some snarky letter to him, but I'm thinking maybe I should wait until I'm not so irritated so maybe any type of reply would be more level-headed.  But then again, when it comes to my kids I'm a bit of a mama bear anyway so any reply will most likely be snarky. 

Worst $40 Spent Ever

Cutie Pie had her check-up with the allergist today.  It's been six months since we've seen him and a LOT has happened.  I've always had a lot of respect for him, and we've been patients of his since Big Brother was nine months old and diagnosed with multiple food allergies.  I've sung his praises to anyone who wanted to listen.  He's never treated my like a crazy mom - even when I was convinced Big Brother was developing new allergies.  I've recommended him to lots of other local (or semi-local) FPIES moms.   

Today it was all I could do to just stand up in the middle of our appointment and walk out.  What a joke.  First off, our appointment was at 9:30 in the morning - one of the first appointments of the day.  Somehow they were already half an hour behind schedule, so I ended up sitting in a room that was about 12 square feet with two small kids.  I was already irritated by the time he came in.  And then he opened his mouth and it became very obvious that I was there to teach him about FPIES, or at least what FPIES is like for Cutie Pie.  Pretty much our entire appointment was me telling him what we had done and where we wanted to go from here.  I told him how Cutie Pie has completely refused any food from a spoon since her quinoa fail.  I told him that we were having a hard time getting her to try new foods.  His response?  Puree some of the new food and mix it in with the things she likes to eat.  Um.....were you listening when I said she didn't eat purees?   Then I explained how she pretty much survives on my breastmilk and a couple bites at each meal and how the only four foods she actually will eat are avocado, watermelon, chicken, and potato.  His response?  Well go ahead a trial dairy because she is almost a year old and you don't need to breastfeed her past a year.   Umm.....really?   Then he went on to explain that I needed to just keep trying those other foods because there is no way she has FPIES to fruits or veggies.  Except that she does.  When I brought up the sweet potatoes he did admit he has another patient that reacts to them too.  Isn't sweet potatoes a vegetable?  Hmmm....  contradict yourself much?   Then I asked about the correlation between her refusing foods and they being possible trigger foods.  He said there is no way that her not eating them is a sign she would react.  He explained that with IgE allergies you might notice an immediate reaction in your mouth, but not with FPIES.  He said with FPIES it takes hours so there is no way to associate the taste of a food with a reaction.  At first that made sense, but then I started to think about it - if (as he claims) kids outgrow it by age 3 then I'm wondering how many times he has heard first hand that a food doesn't hurt until it has sat in your system for a couple hours.  Generally babies and toddlers don't have the vocabulary to explain funny feelings in their mouths....  

By that point I was just ready to leave.  I basically just sat there and tuned him out and waited for him to be done talking.  He said to come back in six months and we will test her again for her peanut allergy and talk about possibly reintroducing rice, because you know - that sounds like a good idea.  

::Sigh::  I think it is time for a new doctor. 

Oh Sweet Jewish Goodness

I am not Jewish, but I have developed a deep deep appreciation for kosher foods - especially foods that are kosher for Passover.  One of our local grocery stores, Jungle Jims, has a whole little room dedicated to Jewish foods and Cutie Pie can eat at least half of the things in there.  It is very exciting.  Yesterday we went to wander around in the air conditioned wonderland (who needs a mall when you have a huge specialty grocery store in town?!!?) and they had chocolate coconut macaroons.  The only ingredients were coconut, egg whites, and chocolate.  Okay, so there may have been a couple other things that I didn't know what they were but the canister said 'Kosher for Passover' which means they are free of Cutie Pie's trigger foods.  And to top it off they were on SALE!  Woohoo!  We bought two canisters of cookies and I was so excited to give Cutie Pie a real-life cookie with her dinner.  She ate about half the cookie, so I call it a success.  Big brother ate a cookie two, so they have everyone's seal of approval. 

It got me thinking though, I wonder if I could create a coconut macaroon cake type thing for Cutie Pie's birthday!!  I've been pinning recipes on my FPIES board, and I think it may just happen.  Cutie Pie has had dairy/soy free chocolate chips once or twice before and did okay with it, so we may just risk it and pray for the best instead of spending a whole week trialing chocolate chips.  Plus, I'm not sure I want to confess to our allergist this week that chocolate is our next trial....

Speaking of trials, green beans seem to still be a go.  I'm not giving it an official pass quite yet and Cutie Pie seems to be loosing interest in them, but so far no puking and no more mucusy poops.  Like I said, sometimes she just takes a day or two to adjust to a new food.  Not that I feel that strongly about green beans, but it would be nice to have a green veggie to give her.  I think our next trial will be Salmon.  Another meat would be give a nice variety to her diet, and salmon is one of those super foods that packs a great nutritional punch.  Cutie Pie is working towards having a very distinguished palate.  Coconut macaroon cake, salmon, what's next?   

Iron, Doctors, and Green Beans

I never got around to updating about Cutie Pie's doctor visit the other day.  Have you ever had a doctor warn you against diagnosing yourself via google?  They mean it.  It is dangerous.  When I got to the ped's office I brought Cutie Pie in the well-kid side of the waiting room because I didn't want her picking up some strange bug when we were just there to check her iron.  No one seemed to mind.  We got back to the exam room and the nurse checked her weight (19lbs 12oz) and her iron (10.3).  Iron still low-ish, but better than it was at her 9 month check-up.  I was already feeling silly being there at that point.  The doctor came in and we talked about her iron, her symptoms, her eating habits, etc and then he thought while I was there he would check her out and see if anything else could be causing her issues.  Well, turns out she had hand, foot, and mouth disease.  Oops.  Apparently it has been running rampant around town.  She had huge blisters in her throat and on top of that is cutting SIX teeth.  They are most of the way pushed through, but not all the way.  No wonder she has been grumpy and not sleeping and not wanting to eat.   I guess it isn't always an FPIES thing. 

That seemed to calm down, sleeping went back to "normal"  (aka waking up at 2am screaming and spending the rest of the night rolling around in our bed) so we decided to go with another trial.  Since she is headed to the allergist next week we wanted to try something slightly dangerous.  My confidence has been boosted since chicken was okay, and part of me didn't think she would actually eat green beans since they aren't exactly famous for being favorite kid food.  But surprise, surprise, she CHOWED down on them the first time we gave them to her yesterday at dinner.  She was sitting in her highchair sucking on them and chewing them up and the whole time just saying "mmmmmmmmmm."  What can I say, she's a weirdo.  Two hours on the dot she woke up (she had already gone to bed) screaming.  Yikes.  She got back to sleep eventually until about 12:30.  Then she was awake until around 4am just rolling around and making noises and just generally not sleeping - not crying, but not sleeping.  Then she went back to sleep for an hour and got up again around 5am.  She's not a great sleeper, but this was bad even for her.   Then this morning she had a diaper FULL of mucus.  Gross and smelly and yucky.  And another one this afternoon.  And less than 60 minutes of naps all day long.  I am not hopeful for a positive outcome.... However a couple of times she has just needed a few days to adjust to a new food so we are going to push through for another day or two and see what happens.  She chowed down on some again tonight for dinner, so we'll see how this goes tonight!! 

Back to the Doctor

We are headed back to the pediatrician's office this afternoon to have Cutie Pie's iron levels rechecked.  I've been concerned about her iron levels for a couple weeks now, so finally today I decided to act like the crazy momma that is hiding somewhere in my soul and insist she be rechecked.   I am not certain she is tolerating the poly-vi-sol supplement she has been getting anymore.  The past few weeks her sleep has gone WAAAY off track and for the last week she has been up for several hours in the middle of the night (which is usually a sign of a reaction for Cutie Pie).  We've also been seeing more mucus in her dirty diapers.  She's done so well with the supplement for almost two months now, but I just don't think it is cutting it and I'm not sure it is doing much for her iron levels either.  Yesterday it was over 100 degrees outside but Cutie Pie's hands and feet felt like ice - a common sign of low iron levels.  I did some more reading last night about symptoms of iron deficiency anemia and several of the things on the list jumped out at me - fatigue (she has been taking 3-4 hour naps twice a day which is totally unlike her), poor appetite, pale skin, brittle nails, etc.  Knowing that her iron levels were already low at her nine month check-up combined with these other things just makes me a worried momma.  And then to top it off one of the other FPIES mommas from the babycenter page just had her kiddos admitted to the hospital because of low iron levels.  It just kinda compounded my worries.   I am hoping we get there and the nurse finds her iron levels to be normal so #1 I can stop worrying, and #2 I can stop giving her the iron drops.  I am already imagining how the conversation with our wonderful pediatrician is going to go:

Dr:  You need to feed her more iron-rich foods.
Me:  Like what?
Dr:  Beef
Me:  She won't eat it.
Dr:  Spinach
Me:  Refuses.
Dr:  Broccoli
Me:  Refuses
Dr:  Quinoa
Me:  FPIES fail
Dr:  Egg yolks
Me:  Refuses

See the pattern?  Cutie Pie survives on avocado, watermelon, potatoes, and a bite or two of chicken here and there.  For real though, I love our pediatrician so I am hoping he is able to give me some insight/suggestions on how to get Cutie Pie to eat a wider variety of foods while we are there.  So wish us luck!

Reverse Iron Chef

I am not a chef.  Sometimes I pretend like I am.  In all honestly I have learned a lot about cooking through the kids' allergy issues, but there are times when I am harshly reminded to not be cavalier in the kitchen.  Today is one of those days. 

Sometime this past week I agreed to a friendly Reverse Iron Chef with a fellow FPIES mommy and blogger.  We had a list of ten foods that we were allowed to use that was given to use by another FPIES mom who was asking for help in finding things for her FPIES kiddo to eat.  The foods were as follows:

1. apples
2.  pears
3.  peaches
4.  milk
5.  chicken
6.  sweet potatoes
7.  green beans
8.  peas
9.  carrots
10. brown sugar

My immediate concern is that five out of the ten foods are ones that are on my banned list so I wouldn't be able to taste them myself.  But I figured I'd let big brother taste them or daddy.  My idea was to put together a day's worth of food with the list.  Breakfast, lunch, dinner, and desert.  Since I put off trying to cook anything until today (the day our little contest thing was supposed to end), I only got through the breakfast portion today.  I figured tomorrow I would attempt lunch, Tuesday I would go for dinner, and Wednesday I'd think about desert.  So here is the only thing I could come up with as a successful breakfast:

A smoothie. 

My intention was to make some type of delicious sweet potato hashbrown.  In my mind it would be easy - grate the sweet potato, squeeze out the moisture, and fry it up in some butter.  Didn't work.  First my sweet potato hashbrowns completely stuck to the pan in the first spot.  I added some more butter and then they were WAAAAAY too buttery.  Fail.  Then I thought that maybe I could cook them in the toaster oven like I do Cutie Pie's frozen hasbrowns.  I shredded some more potatoes, squeezed out the liquid, greased the little cookie sheet, used a pastry brush to lightly spread butter on the top of the hasbrowns, and put them in at about 400 degrees.  The toaster oven filled with smoke before they got toasty.  Fail.  Then I thought about a pin I saw on pinterest about cooking hasbrowns in a waffle maker, so I started again.  Brushed some butter on the waffle maker, cooked for 8 minutes.  When I checked on them the outside was crispy looking, but the inside was a soggy mess.  Not very hasbrown-y.  Fail again.  Cutie Pie, big brother, and daddy were getting hungry for dinner at this point so I had to stop making foods no one would eat and focus my attention on dinner foods.

And then I thought about my smoothie.  Who doesn't love a good smoothie?  And with the ingredient list you could make a mean breakfast smoothie full of fruit and protein and calcium.  So here is my smoothie recipe.

Peach, Apple, Yogurt Smoothie

A handful of frozen peaches

A dollop of plain greek yogurt (I like greek yogurt because it has more protein than regular yogurt)

A couple ice cubes

A couple splashes of apple juice

Blend.  If it is too thick, add more apple juice.  If it is too thin, add more ice.  

Easy enough. 

Sometimes I Forget

There are days where my whole world is consumed by FPIES.  And then there are days like today - where I *almost* forget.  Good days like today where Cutie Pie is in a great, giggly, goofy mood.  There is no screaming in pain, no mucusy diarrhea, no projectile vomiting.  Days like today where she eats like a normal kid (okay, maybe not normal but at least she doesn't act like food is evil) and even takes naps.  Days where I read the ingredients on the cookie box and reeeeeeeaaaaaaaaally think about eating one myself.  Days like today when I start to doubt this FPIES thing is even real.  

Ironically, these are some of the hardest days for me.  Don't get me wrong, I am ecstatic that everyone is happy and healthy.  I know it is because we are super diligent about making sure Cutie Pie stays safe.  But I admit days like today are the hardest because I have to find some super self-control way down deep and resist the urge to treat her like a "normal" baby.  Resist giving her a graham cracker to gnaw on.  Resist jump-starting a new trial even though we are only on day four of our sunbutter trial.  Resist, resist, resist. 

And then I get scared.  The last time we were in such a good spot was right before our big quinoa fail.  I was doubting that she even had FPIES and thought maybe her other reactions were just coincidences.  And then it all came crashing down around us and she hasn't been the same since.  That was almost two months ago.  TWO MONTHS it took for things to get back to normal.  I am terrified of another reaction, another set back, more wasted time, and I'm afraid that by feeling good about where we are means I am somehow tempting karma to get us. 

But for now,  I will enjoy this peaceful afternoon.  At least for now, right in this moment everything is right in our world. 

Birthday Countdown

Cutie Pie's first birthday is in one month, one week, and one day.  My oh my how time has flown.  Lately I have been obsessing over trialing foods that will provide her with a birthday cake and fun birthday foods because, you know, she REAAAALLLLLY cares.  This week we settled on a sunbutter trial.  We are on day three and so far, so good.  She can't decide if she likes it or not.  On Friday I tried spreading some on her cheecha puffs and it was a no go.  Then I just put some on a plain spoon and let her suck on it and she seemed to like it a little.  Saturday it was a total refusal.  So then today for breakfast I made her a banana/coconut/sunbutter mush and she ate half a bowl!  It was chunky and thick enough that I could put some on a spoon for her and she could then feed herself without it sliding off her spoon.  Sunbutter would be a great pass for us.  It's high in calories, a good source of protein and iron, and let's face it - it is delicious!  Plus, I'm thinking I might be able to fix up some sunbutter frosting to top some muffin/cupcake/cake concoction and it would make a delightful mess for a smash cake!   I am imagining the pictures already.... 

Our goal for this week is to get into a routine of "eating" three meals a day.  I have a bad habit of just giving her a couple puffs or a toy or a sippy cup to play with while we eat because she makes such a mess and eats so little.  But with only a little over a month until she is one it is time to buckle down!  We did pretty good today, and actually she surprised me with how well she ate.  I do, however, think we need to get a dog to clean up the mess she makes!  I swear I spend more time cleaning up after meals than I do preparing them! 

I Am "That" Mom

I used to be an expert in everything parenting related.  Of course, that was before I had kids.  During that time I also worked in a daycare with infants and toddlers which made me even more of an expert and it was obvious that I knew what was best for those kids much more than their real parents.  I mean c'mon - it was my job.  It is true that I spent many more hours each day/week with the kids than their parents did, but as anyone who has had a child in daycare will attest, there is still no replacement for the ingrained knowledge of your child that comes from actually giving birth to them.  It wasn't until I had my kiddos that I understood.  

However, there was one mom in particular was notorious with us teachers for being completely clueless.  She was the mom who had to be completely overwhelmingly annoying in trying to prove she loved her kids.  I don't know if she felt guilty for leaving her kids there a million hours a week (no joke - they were at school before 8am and were the last ones in the school to be picked up at 6:30) or if she was trying to convince herself that she was a good mom, or if she was just lonely and had no one else to talk to other than us,  but everyone would cringe every time she came in the door.   She told me more details about her symptoms that led her to think she had Celiacs than I ever care to know.  When I ended up with a c-section with my son she stopped me one afternoon to ask how I was pooping because it was so horrible for her after her c-section.   We all thought she was nuts.  (Quite possibly she really was).  But anyway, one of the big things that made all the teachers cringe was the pride she had about needing to give her kids laxatives.  She obsessed over those kids' poops and gave them daily laxatives to help it along.  There were times that her daughter would have weird diarrhea and she'd still be giving laxatives and she always claimed the pediatrician told her to.  We all thought she was crazy.

But this week I became that mom.   Cutie Pie hasn't pooped in almost two weeks, except for a little bit last week after needing to use a suppository to help her along.  I talked to the pediatrician yesterday morning and he wants us to start giving her a daily dose of Miralax.  He explained that it's not really a laxative, it doesn't make you go.  Instead it pulls water into your digestive tract which softens it up and makes it easier to go.  He suspects that the iron supplement we are needing to give her for her anemia is making her constipated and she her colon has gotten so stretched out that her system is just out of whack.  So now to counteract the side effects of one medicine, we are giving her another one.  I feel so bad for her.  If she could just eat a balanced diet we wouldn't have to give her EITHER one.  I feel guilty that iron is one thing my milk doesn't provide for her.   I feel like there HAS to be a better way.  And mostly I just feel guilty for judging that one crazy mom. 

Coconut Flour Muffins

 Our trail for coconut has been going - eh - it's going.  I'm not sure what to think.  Cutie Pie is in the middle of a pretty bad case of constipation which we've seen with a couple other questionable foods.  I'm not sure if it is the eggs or the coconut, but just to be sure I whipped up some coconut flour muffins.  That stuff is PACKED with fiber so if anything is going to help her go, then coconut muffins will!   I found a couple recipes, tweeked them to fit our needs and came up with this:

Coconut Flour Muffins

1/2 cup coconut flour

1/2 + 1/8 cup sugar

1/2 t baking powder (I use one that contains potato starch instead of corn starch)

1/4 t salt

6 eggs

4 T coconut oil (works best if it is melted)

Directions:

Mix ingredients.  If it is too thick you can add a tablespoon or two of water/milk.

Bake at 350 for 18-20 minutes.  

Makes 12 muffins

Nutritional Info (supplied from SparkPeople recipe calculator)

Calories -  134     Fiber - 2g     Protein - 3.8g

They were actually really tasty!  They had a sort of egg-y taste and left a sweet coconut-y aftertaste.  Cutie Pie wasn't thrilled, but she isn't thrilled about most food.  Of course, she LOVED the cupcake paper.  That was apparently super delicious. 

Cutie Pie's Feast

The past month or so Cutie Pie has been refusing to eat.  It seemed to start with her quinoa fail.  Even after she wasn't showing fail symptoms anymore, she was still refusing to eat food.  When we offered purees she would clench her jaw shut, shake her head, and cry.  If we did manage to get food into her mouth, it was immediately scraped off her tongue with her teeth and spit back out.  Finger foods were immediately thrown on the floor.  Once in a while she would lick or suck on something, or even chew on it but it would always end up back in her lap or on the floor.  We tried more distractions, less distractions, sweet foods, savory foods, bigger pieces, smaller pieces.  Nothing.  What can I say, she is stubborn.  I really think she was simply afraid of food.  I don't really blame her - so much has hurt that little tummy in her short little life!  I'd be afraid to eat too!

But Monday evening something amazing happened - Cutie Pie ATE.  We went to my grandmother's house for dinner and she happened to have a bowl of watermelon slices.  Cutie Pie was reaching for one like it was calling her name, so we figured why not.  We had attempted to trial watermelon and even though she didn't eat a ton we called it a pass.  So I just gave her a whole slice and she ATE IT.  Like, the whole thing.  Just sat in the chair and gnawed on it till it was gone.  She was soaked with juice and grinning like a crazy person.  So I gave her an egg yolk - and she ate a couple bites of that.  Then I gave her a slice of avocado and she ate that too!  I felt like jumping up and down and taking a video of this momentous occasion!  It was like all of a sudden she trusted food to not hurt her again.  The last few days have been super exciting.  I fried her up some potato pancakes (thawed hashbrowns, potato flour, an egg, and a little breastmilk) and she ate it.   This week we are trialing coconut and she has been snacking on the flakes and eating her Cheecha puffs with coconut manna spread on them.  It is almost like having a normal kid - if normal kids ate things like coconut manna. 

In other news, I am down another five pounds.  It is almost scary how fast I am dropping the pounds.  Don't get me wrong, it is nice being down to a weight I haven't seen since college, but it can't be healthy.  I am starting to notice things like my nails are more brittle and my hair is falling out and my skin is paler than usual.  I think I am probably missing some crucial things in my diet, and I am afraid I am setting myself up for some future problems.  Not to mention that there is no way I can keep up this weight loss once I eventually go back to a normal diet.  No way am I keeping this up a day longer than I have to!  I am thinking about going to see a nutritionist so I can make sure I am getting what I need and maybe they would be able to help me get Cutie Pie a balanced diet so she won't still need to drink my milk when I send her off to her first day of school!   Plus, those two boxes of Girl Scout cookies I have stashed away are calling my name pretty loudly these days....  I'd like to be able to eat them before next year's batches are up for sale!!

ONE THOUSAND

My blog hit 1,000 views today.  I cannot believe it.  ONE THOUSAND people have looked at this blog.  My online rants and raves and whining and fears have been read.  By strangers.  A lot.  Thank you!

Tonight was our church's women's ministry meeting.  It is just about one of my favorite nights of the month.  My husband comes home from work on time and I get to go sit with a group of other like-minded moms and talk and laugh and pray and just feel normal.  No one asks about FPIES.  People talk to me because they want to know about ME and not just about my kids.  It is amazing to feel like a human being instead of just being Cutie Pie or Big Brother's mom.  Doesn't happen very often.  You know?

Our lesson today was about being grateful.  So often (and I am soooo guilty of this!) we complain and we whine about problems without being grateful for the bigger things.  Of course my mind went straight to FPIES.  I hate FPIES.  I have even posted about being mad at God over it.  But you know what?  I often forget that I have a beautiful, sweet, loving, smart little girl in my arms.  She may spend a lot of time being sick, but she is my beautiful Cutie Pie.  Mine.  God gave me a HUGE blessing when he gave her to me.  Six years ago I didn't think I would ever be a mom at all.  My doctors told me I had a hormone imbalance and suspected I might have something called Polycystic Ovarian Syndrome.  She told me it wasn't a huge deal, but it did usually cause problems getting pregnant so when it came time for me to want children I may have difficulty.  Considering I was 22 at the time, not married, and had no desire to have children anytime soon, she didn't think it was a big deal.  But I did.  I was terrified from that moment that I wouldn't live my life dream to be a mommy.  I always knew being a mom was my heart's desire and God had promised me to be the mom of many.  And you know what?  He followed through.  Neither of my children were hard to conceive.  I have been blessed.  And I am so grateful that He has given me these babies.  Doesn't make FPIES any easier to deal with, but I'd much rather have kids with issues than no kids at all. 

Birthday Blues

Cutie Pie is officially ten months old.  I cannot believe how fast the time has gone.  I have several other friends with kids around my daughter's age and they are all busy planning first birthday parties, and as excited as I am for them I am equally sad for us.  I don't think we are going to even attempt a birthday party for Cutie Pie.  I don't think it is fair to invite a bunch of people over to our house (we don't have family in the area, so if family were to come it would be for more than a short party) and serve them a bunch of food that Cutie Pie nor I can eat.  And then there is the problem of the birthday cake.  As of right now, we have no ingredients to make a cake and get those precious cake smash photos.  I have seen several ideas on how to sculpt watermelon into a "cake" which I do plan on doing, although despite dedicating 10 days to trialing watermelon with Cutie Pie she never would eat enough to actually declare it a pass or fail.  But it's just not the same.  Plus, I feel like a lot of our friends and family do not really understand what we are up against with FPIES, and honestly there are days when I don't understand it myself.  I hate answering a million versions of the same questions and hearing a ton of those stupid 'I'm-trying-to-be-supportive-but-I-don't-know-how" comments.  My favorite comment of all time is this:

Maybe she'll outgrow it. 

Maybe, maybe not.  She might grow out of all or some of her triggers.  She might not.  No one really knows.  What we do know though, is that when she turns three we will do in-hospital trials of her biggest triggers with an IV in place just in case.  Have you ever watched them put an IV in a three year old?  I have.  It is not fun.  Nor would it be fun if she hasn't outgrown it and ends up puking herself into shock.  And although it is possible she would be fine, right now she is very sick.  Right now.  You know.  Today, tomorrow and next month we will still be dealing with this.  And it sucks.  A lot. 

But you know what?  She is still the cutest baby I've ever met.  She is smart and sweet and stubborn as hell.  and I love that little girl and would do this all over again just to be able to have her in my arms.  And just because I can, I'll show you just how cute this FPIES cutie is!