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..........

Sunday, October 17, 2010

No longer in the dark

Emmy was diagnosed with FPIES late December of last year. When she was diagnosed we were given a couple of hand outs on the syndrome and told to cut out a lot of her foods then sent home, that was it. We had never heard of her syndrome before and had to teach every doctor, paramedic, first responder, nurse, ect. on how to care for her and exactly WHAT the syndrome is.  When we were first diagnosed i came straight home and looked it up on-line, i found Jack's video and bawled knowing that was what our daughter went through for months. I had no idea what we were going to do and knew of no one else with a child who had FPIES as well. We were in the dark for almost 9 months when it came to first hand advice or the chance to speak to some one who had walked a day in our shoes. We knew of no one else who knew what FPIES was nor what it stood for. 
    I was at work one evening and my nurse pract. from when i was pregnant with Emillia came in, she asked me what the name of M's syndrome was and litterally jumped out of her seat when i told her, she informed me that she had met another mother who's child was just diagnosed with FPIES and that she had her telephone number for me. I cried, i couldnt help it, i took that card with the phone number on it and went staright outside and called.......... The other FPIES mommy and i finally got in touch with each other and talked for quite some time that night ( until my phone died actually.)  She introduced me to so many other amazing FPIES mommy's on line.  They have all been the answer to our prayers! every one of them we have met have been there for us if we need advice, someone to listen to us, or even to give us great ideas on what we can do to "disguise" M's new foods.  It finally feels like we are no longer in the dark and it is such an amazing feeling to be able to turn to them knowing they have walked "that day in our shoes." Our family and friends have been great through all of our journey but they will all admit it- they don't know what to say because they have never been where we are.
    To all of the other FPIES mommys' i have had the chance to chat with and have gotten to know your stories as well as share ours with- i know we've never met face to face before but we are forever greatfull for you guys and all you have done for us in such a short time of knowing us. We no longer feel like we are in the dark and we know we are not alone in this FPIES journey any longer. Thank you again SO much for everything all of you have done for us, we appreciate it greatly......

1 comment:

  1. So glad you found the online community. I couldn't imagine starting out this journey without the support of these ladies. Emilia is precious! If you don't mind, I'm going to link your blog on my blog. Thanks! Heather