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....