This is Emillia's story as seen through our eyes...... Emillia was diagnosed with FPIES right before christmas of 2009 she was almost 10 months old. We have had our challenges, our ups and downs, numerous tears, and even some laughs through our experiences.
We have met some amazing people during these trialing times and we are very thankful for them and all that they have done for us!
Emillia is a very sweet vibrant little girl as you will learn reading through this blog. She is a trooper and always seems to have a smile on her face through even some of the hardest times.
Emillia has taught us many lessons in life already and i know she will continue to do so, she is our princess!

God grant us
the serenity to accept
the things we cannot change..........

Tuesday, November 9, 2010


I'm writting this post because i found something today that made me cry...........I've always liked to bake, j will joke around and call me Betty Crocker at times. Before Emmy was diagnosed i used to go on baking sprees and bake seriously 6-7 "treats" at a time, since Emmy's diagnosis i haven't baked a single thing and no longer enjoy it.
   Last year for christmas i bought Emmy and i cute matching cupcake aprons........ her's is just precious! needless to say its still in its packaging as well as mine, they are hidden away in a cuppord for random things. After Emmy's diagnosis shortly after christmas j must have put them away, i forgot totally about them.........
  Finding them today its still kind of a stinging slap to the face, i know it shouldn't be but it is. Especially thinking about how M is lately, we hardly ever eat in front of her but with me being home all day with her lately it's becoming harder, yet each time i DO eat in front of her i loose my appetite pretty fast.... before, Emmy would just sit there and look at you while we ate (which was hard enough) but lately she will climb right up next to me and make eating sounds (um, um, um) and say "I eat?" Now THAT is heartbreaking..... I try to not let it get to me but its becoming harder and harder every time.  I feel like a bad mother at times even though i know i am not.
  It seems like a punishment eating food in front of her even if its not a "treat."  Every time she sits by me and says "I eat" i want SOOOO much to give her a bite of what i have but then i stop and think, "is it worse letting her sit there and look at what we are eating knowing she's interested in it and wants to try it (sometimes it feels like a mean joke) or should i cave in and LET HER have a bite, just a TINY bite?"..... then i think of what happens to her when she has her offending foods...... it would be evil to let her have any of what i have because i know the pain it will put her in just to taste the food on her lips for those couple of seconds..... she'd have a full blown reaction to the "dairy" in what im eating and end up in the hospital. It's like a horrible mind game when it comes to food with her and even more horrible knowing what it does to her.... Every day food poisons my daughter......
   Emmy has never had ice cream, cake, cookies, ect..... She got fruit on her 1st bday, we didnt get the cute pictures of her diving into her 1st bday cake getting frosting everywhere..... she wont have those pictures on her 2nd bday either..... I dont usually beat myself up over foods because i know she cant have 99% of your every day foods. Lately however its becoming harder with her becoming more interested in them she will be 2 in almost 3 months. Before it didnt seem to be a problem, she never noticed, she never knew anything different but as she gets older it is obvious that she IS noticing that things are VERY different for her. How do we get over this hurdle? How do we make a (almost)2 yr old understand more fully what her syndrome is? every time she asks for a bite of my food im all of a sudden done eating, i throw it away and sit down with her and tell her "the food mommy was eating will make you very sick emmy, it has bad stuff in it that makes YOU very sick, mommy is very sorry that it does it to you but we will learn more about it................."  FPIES is a mental evil, it will nag and nag at you, you will feel very powerless over thoughts about FOOD for pete's sake...... it IS a war over food when it comes to a child with FPIES.
  As Emmy grows we will continue to learn everything we can on her syndrome so we can teach HER everything.   We will always be the advocates against her FPIES but she will have to be as well as she gets older..... How tho do we teach Emmy about her syndrome yet not expect to her to have phobias against food? It's a double ended sword.
  We were at the store the other day looking at halloween costumes that were on sale and of course......... the candy is placed right beside them..... THAT is torture, why cant they put candy in non-appealing bags?! Emmy was quiet for a couple of minutes but then started in on her Pu-LEEZE's..... so we spent over an hour looking at candy (emmy saying please, and i reading labels over and over again).... it was a toss up between starburst or skittles....... both of them seemed to be "ingredient ok'd" and M settled on the skittles. When i say settled on the skittles i mean took the bag, hugged them as close to her as she possibly could and wouldn't let them go......... however, that bag of skittles is still unopened hidden in the house..... even though the ingredient label seems ok i am still scared to give them to her, once i talk myself over the choking hazard i get stuck on the mental fight on wether or not they would be safe for her, is it going to send her into an episode?! once i get over that hurdle i run into the hurdle about nutrition.......... there is ABSOLUTLY NOTHING nutritional in them and giving them to her would take up room in her tiny belly not leaving any room for foods that she NEEDS to eat for the day......... It is def a constant battle........
    (in this picture the little superman to the right of Emmy is her cousin, he is 20 days younger than her yet noticeably taller than her, he weighs between 25-30 lbs, not certain, Emmy is holding steady at 20-21 lbs)

  While reading the labels on the candy bags another family (mother, son (13?) and a little girl came to stand next to us, Emmy had been playing with a toy we had picked up along the way and the other little girl wanted her to share it.... Emmy and this other little girl both sat side by side in the isle "sharing" playing with this toy, the two of them were getting aslong very well and the other mother asked me how old Emmy was.... Emmy is 20 months old, in return i found out this other little girl was 2 (less than 4 months older than emmy) hearing that i stopped to look at the two of them side by side.... i stared at them for a good 5 minutes noticing the major difference in size and height..... Emmy was SO tiny compared to this other little girl. We know Emmy is small for her age, its one thing to know it and say it but def different to actually see it. Emmy standing alone looks healthy, youd never guess she had an underlying food issue, but sitting beside this little girl you could SEE the HUGE differnce, and the other mother did and she didnt hesitate to comment on it. "WOW, she is tiny for her age" that comment brought me back to reality. I HAVE A DAUGHTER WITH A VERY RARE FOOD SYNDROME, SHE BECOMES VIOLENTLY ILL AND GOES INTO A FATAL SHOCK, NOT ONLY IS HER SYNDROME RARE IT IS LIFE THREATENING. We have swallowed that fact and taken it for granted alot lately considering M hasnt had any new foods there for no new "episodes"  Ive learned to read alot of people lately when it comes to Emmy and her syndrome........ so to this mother i simply said "she has a very rare food syndrome" what i wanted to say is "I dont starve my daughter, she is healthy considering what syndrome she has and we are very thankful for that fact. Her FPIES in a sense starves her..........." I just smiled and took one last look at the 2 of the girls sitting there playing as this mother smiled kindly at me and turned her back to me........... She never blinked when i told her Emmy had a rare syndrome she just looked at me with a smile like i was making it up......... We will continue to hold our heads high and take everything in stride, one day at a time........... Emillia, God grant us the serenity to accept the things we cannot change..............


  1. We've been so busy with Sam's health lately, and absorbed by our own family- I have these moemnts every so often as well....and it always hits like a ton of bricks...and I know it will get more challenging before it gets easier...

  2. Halloween was tough for us too. My daughter has FPIES and reacts to dairy, which is in just about everything. This year I made a conscious effort to not give out candy to our Trick or Treaters, knowing that food allergies make this holiday especially painful. At a Halloween party we attended, I noticed another mom giving back candy and learned that her daughter also has a food allergy-to egg. This little girl was so happy that I passed out Halloween tattoos and a little coloring book, something that she could actually safely keep and enjoy. On Halloween night, we still took my daughter trick or treating, a dicey situation with FPIES. One particularly nice neighbor offered to give my daughter a soda instead when my LO told her that all of her candies contained milk. Bless that neighbor, my daughter was so thrilled with her soda! Most of the candy my daughter received will sit untouched up high on a shelf. Honestly who has time to call every candy manufacturer on the planet and check the ingredients on all of these candies?
    I think that FPIES starves our entire family too. I keep losing weight and my non-FPIES child is down to the 7th percentile for weight and looks like a stick. Food terrifies me and I spend hours looking at package ingredients only to put most everything back on the store shelf. Unless I cooked it or brought it, I presume it is unsafe.
    Perhaps Yummy Earth lollipops would be a safe candy for Emmy--they are made of fruit juice and they do not contain dairy.