Saturday, November 23, 2013

Baby B's 200th: One for the Peg Board

Dealing with a rare diagnosis, doing everything in your power to help your child/children, navigating doctors appointments/reactions/kitchen debacles with strange ingredients. . . let's face it. FPIES is HARD. Its ok to say it! All of you families that live this day in and day out, you are far stronger than you truly realize and really ought to be commended for all that you do!

As we move through the days,months and years with this diagnosis, we have encountered pediatricians, specialists, medical support staff and allied health providers. We have read countless medical journal articles, shared stories on support forums, and accessed essential information from support organizations. All of these encounters and experiences provide us with an opportunity to gain tools, tools to add to our "peg board" in our work shop, as it were. But it is our job to identify the tools and to use them to the best of our abilities and to the best of each tool's usefulness.

Imagine a house without a door. You are inside and need a way to get out-- you have a door that needs to be hung and its hardware. Your tools include a wrecking bar, a ratchet, and a saw. You can certainly use any of these to cut or smash a hole in the drywall, and the wrecking bar is likely to get you through the exterior wall as well. But what you end up with is not a door, but rather a hole in the wall. Then, someone comes along and hands you a drill. Suddenly, you can cut that opening with your saw and you can use your framing, hinges and screws to attach that door. You don't balk at using the drill because it isn't green or pink or red, or it came from Home Depot rather than Lowes-- if it works, it gets used. And that hole becomes a door.

That is the thing with tools-- they are typically only useful if they are being USED. I encourage all of you, whatever place you may be in in your family life with FPIES, look around at the tools being offered. Sometimes they may be in places you would not expect, sometimes they are handed to you, no expectations, no questions asked. It is our tools that will power us through the dark nights, on to more information, on to opening doors that seemed helplessly stuck. A solution starts somewhere and it is the tools, not the color or brand or location of the tools, that will bring us closer to the answers we so desperately need for our children and our families. Let's connect to one today:
 The FPIES Foundation Global Patient Registry

Thursday, November 21, 2013

A Place on the Map

We love maps. In fact, our homeschooling curriculum (self-created) is based on geography. More on that later. . . So, yes. The girls love maps, even little C, who is now, wait for it. . . 18 months old! But despite our love for maps, we have often felt like a family without a compass, navigating the chaos that we know to be FPIES. We have often felt "off the grid" when we go through periods of family life seeming, well, "less than normal."

Tonight, however, we find ourselves looking at a map, and guess what?! We are ON it! That little flag? That's us! I am talking about The FPIES Foundation's ground breaking new release--- a global registry for children and families affected by FPIES! All of these years (we've been active in the FPIES community for 4 years now) of hoping that someone could share the information from the families living with this condition in an organized way with the doctors trying to help our children, and now with a click of a button, this is all possible. The FPIES Foundation has figured it out!

The other thing that B, C and I love (Daddy loves it too!) is that this registry doesn't just stand alone-- it is actually part of the National Institute of Health Global Rare Disease Registry program through a program called "Connect," by Patient Crossroads. Our information is not only going to make an impact for families but it will also make a large impact on a far larger scale.

Click on the button to connect and add your little one to the growing group on the registry. Find your place on the map-- can you find us? We've been looking for you!

The FPIES Foundation Global Patient Registry