Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Thursday, December 5, 2013

Little Man's "Faces of FPIES Spotlight" visit with Hope for Wyatt

When I first started blogging, among the reasons to do so was to share Little Man's story with others - to keep friends and family updated but also to help other families know some of the experiences we have had.  This blog, although I have written nearly 400 posts in 3.5years, is a mere fraction of what Little Man's FPIES is and looks like from day to day; and that is only a mere fraction of who HE is.  FPIES is a diagnosis, not a definition.

I wish I could share more, I wish I had more time to share more because I have always taken my time with my posts -- being very careful about what I put "out there".   There is so much to Little Man's story that would be scary to read if you didn't know his whole story, so my blogging has lagged behind.   Some would say (have said) that my posts here, sharing Little Man's experiences, are 'scary' in and of themselves, just for being what they are.   I wonder if those people think of what they are saying?   That a little boys life is scary? A sweet little boy only wanting what any other 2, 3, 4 year old boy would want from life -- to be happy, safe and loved.  I never intended telling his story would be 'scary' because his life isn't scary.   FPIES itself can be scary, not knowing how to help your child through the pain, symptoms and vomiting of the FPIES being "triggered", not knowing how to properly read a food label, or how to completely exposures of the 'trigger' food, not having adequate medical help when your child is sick,....these can be what is scary about FPIES.  But, they don't have to be.   One can learn how to read a food label, how to avoid a food trigger, how to avoid cross contamination triggered symptoms and reactions, how to advocate for your child with their medical team -- your partners in the care of your child.   Our son's experiences and life are not scary, FPIES can be scary but it doesn't need to be.   Empower yourself, help empower others, share what you learn, advocate -- help your family, friends and doctors learn about what FPIES looks like in your child and how to help keep them healthy and thriving in their individual environment.  Get help and support and know you are not alone.

I am not alone in our blogging, there are now several dozen blogs dedicated to FPIES from other families on this journey, sharing what they are learning, what FPIES looks like in their child, how it affects them and their family.  A friend I have 'met' on this journey, who recently started to journal her families journey with Food Protein-Induced Enterocolitis Syndrome on a blog, "Hope for Wyatt", asked me if I could share Little Man's story for a "Faces of FPIES Spotlight" she is doing on her blog.  Hop on over and read what we shared on "Meet Samuel", and "meet" Wyatt and his family while you're there.

Sunday, December 1, 2013

FPIES Registry!!

The FPIES Foundation announces the first of it's kind FPIES Patient Registry!  This is an exciting step for the families of children living with (and outgrown of) Food Protein Induced Enterocolitis Syndrome!!  A patient registry that provides a voice to patients in a rare diagnosis is so important, a diagnosis that still has research windows open with treatment and management protocols still being developed.  The exact mechanisms of FPIES is yet to be fully understood....and in the meantime, the number of those diagnosed is multiplying rapidly.   This is a critical time for the voice of the patients to be connected -- for doctors providing care today, for studies of FPIES, for additional, new and varied research for tomorrow, for families to be connected, for FPIES to be 'on the map' in this new way.

Please add your voice, your child's voice to this registry.