National FPIES Day reflections

May 4th is National FPIES Day (In Oct there is a Global FPIES day, so we get two days to reflect, advocate, and celebrate the small victories in this overwhelming disorder).  I’ve been thinking about our journey over the last couple years and how it has changed our family, our lifestyle and me as a mom. We have come a long way.  I haven’t written in so long, it is pretty amazing to see how much has changes since my last post. I’ve been busy and we’ve all been growing! I have been stretched and grown and learned to deal with the challenges.  My faith has grown as I learned to rely on God’s strength and trust His will for my child, knowing He loves her more than I can imagine. Most days I can deal well. But there are still the occasional days where the overwhelming feeling of responsibility makes me want to hide under the covers all day. The days I’m so tired and would give anything to be able to order take out, eat out or make a quick simple meal that feeds my whole family. These days I really struggle with self pity and jealousy. For example, today after taking four kids grocery shopping I was exhausted. I came home to make a “easy” lunch of grilled cheese sandwiches.  That is 3 totally different sandwiches.

 

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Miss S has gluten and dairy, Miss B has gluten free and dairy, while I have gluten and non-dairy (which was disgusting, by the way, and I scraped it off my bread) Miss A thankfully had some leftovers.

 

Miss A has a good base of foods now that she tolerates and has celebrated the additions of a few previous triggers such as chicken, carrots, pineapple and recently wheat! That’s pretty huge for us. It’s giving us hope that she is outgrowing this.  We still have a handful of food triggers to test, some of which will be done in-hospital due to the severity. We are planning those for around the time she turns 3, this fall.  Food trials are stressful. I need to offer her the food in the morning so she will not react while sleeping which can be dangerous with the vomiting and if she goes into shock. After the food is given the waiting begins. I need to be mentally and physically prepared to go to the ER.  She typically reacts 2hrs after ingestion. I prefer to be home during trials in order to deal with any symptoms and also to be close to the hospital.

Looking back, I remember the worry of Miss A picking up anything and everything and putting it in her mouth. The stress of any food being left on the food. The work of meticulously cleaning everything.  These days the challenges have changed. She is 2.5 yrs now which amplify some other concerns.  Like the new-found defiance when said she can’t eat something, the understanding that others are eating things she cannot, and the picky eating phase! Whew!

In the last 2 weeks, our family has had 5 reactions, two of which took us into the ER.  None of those were Miss A though! Though I am hopeful that she will be outgrowing this soon and know that it will be a huge relief, our family still deals with “normal” IgE allergies as well.  In fact Miss B has been in the ER more times than Miss A for reactions.

I am currently in a period of suspense as our newest child, sweet Mr. D, has reached 6 months and has begun solids. Unfortunately he had an episode that looked horribly familiar to Miss A, resulting in a trip to the ER.  And another milder one a few days after that. I am holding off solids for a few weeks to rule out stomach bug and see what happens when we resume solids. There is a good chance we will be dealing with FPIES all over again. If so, I am hoping the last 2 years of experience will make this round a little easier.

However, in and through all of this, I find joy, hope and strength. I have been blessed by friends and family that have made the enormous effort to make safe foods for us, or even just to welcome us over for fellowship while we bring our own food. FPIES and allergies can be so isolating, but we have some good people in our lives, whom I am so thankful for. It has made all the difference! So a HUGE thank you to everyone that has supported us over the last couple years with prayer, encouragement, food and fellowship. Thank you from the bottom of my heart!

 

Miss A: Divine Strength

This last week our youngest, Miss A (currently 9 months), was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES). We have a challenging road ahead of us, full of unknowns and uncertainty. The diagnosis is just the beginning.

In short, it is a delayed (symptoms occur typically 2-3 hrs after ingestion) food allergy that cannot be tested for (trigger foods do not show up on standard allergy tests). The danger is anti-histamines and epinephrine have no affect, and the outcome is severe dehydration from repetitive vomiting, which can lead to shock.

Really we don’t know much of what’s to come. So far we know of 4 foods that make her sick, with no known safes yet. The only way to find safe foods is trail and error with extremely vigilant label-checking and documentation of foods tried and reactions that follow. Hopefully these 4 foods are all she reacts to, but it is possible she could have numerous triggers. We also are still unsure of how sensitive she will be to exposures, and how severe her reactions will become.  The good news is kids typically out-grow this condition around 3 or 4 yrs of age.

Those that know us well, know our family is riddled with food allergies. Each person having different allergies, our list of safe foods we can share is quickly decreasing.  I’m thankful that I am comfortable in the kitchen and usually enjoy finding recipes that work or experimenting to create new ones that fit our family. I lack discipline in the cleaning department though, and will need serious focus to ensure my floors are completely food-free and safe for my now crawling babe. (Side note, she crawled on hands and knees for the first time today! Yay!)

After a few days of letting this news sink in I am fluctuating between confidence and hope, and anxiety and fear. I am typically very optimistic and hope that I can continue to take this one day at a time, resting in God’s strength and peace. After all, the meaning of Miss A’s name is divine strength; to receive her strength from God.

 

If you want to know more about FPIES, go to http://fpiesfoundation.org/about-fpies-3/

 

the adventure begins…

Hello! Welcome! My first blog post! Thank you for coming by. I have decided to start blogging as a creative outlet for me, to compile my thoughts, ideas, adventures, photography, and document our journey through parenting and …..homeschooling. Yes! We are taking the leap and will begin homeschooling this fall.

One of the main motivations to finally set up a blog, after tossing the idea around for nearly a year, was our decision to home school.  I hope you will join us on this journey of learning and discovery as we find our way. We are super excited, and a little terrified of the adventure ahead.

I sent in our notification form to homeschool this morning. Then we went on a long beautiful bike ride. This gave me confidence as I watched my girls play in the creek, exploring and interacting with nature. We were mesmerized by gorgeous spider webs, what floats and sinks in a rushing creek, and experimented with building a bridge. This is the kind of childhood I want to provide. They squished their toes in mud and laid down in the cool grass. I want to experience many more Monday mornings like this. And so that is one of the reasons we have decided to homeschool. I’m sure you’ll be hearing many more of our reasons in the time to come.

I hope this blog will be a place to share ideas and stories, to be inspired and humbled and to share a joy for life.

Thanks for listening.