Diagnosis Road: Ellery's Story (Food allergies, eczema, undiagnosed growth and intestinal issues)

The diagnosed: Ellery, nearly 2 years old

The ones who love and care for her: Emily and Brandon, her parents 

Name the diagnosis
Ellery has 20 anaphylactic food allergies. She also suffers from severe atopic eczema (which is allergy related). She currently has a number of digestive/intestinal issues that have been undiagnosed along with a significant concerning lack of growth. She was born in the 30th percentile in length and has dropped to the zero percentile. She sees a team of specialists at Cincinnati Children's Hospital where she's currently undergoing tests and labs to continue the investigation of what the issues are and to reach a diagnosis and solution. 

Food allergy is an immune system reaction that occurs soon after eating a certain food. Even a tiny amount of the allergy-causing food can trigger signs and symptoms such as digestive problems, hives or swollen airways. In some people, a food allergy can cause severe symptoms or even a life-threatening reaction known as anaphylaxis. (via The Mayo Clinic) 

Anaphylaxis is a severe, potentially life-threatening allergic reaction. It can occur within seconds or minutes of exposure to something you're allergic to, such as a peanut or the venom from a bee sting. 

The flood of chemicals released by your immune system during anaphylaxis can cause you to go into shock; your blood pressure drops suddenly and your airways narrow, blocking normal breathing. Signs and symptoms of anaphylaxis include a rapid, weak pulse, a skin rash, and nausea and vomiting. Common triggers of anaphylaxis include certain foods, some medications, insect venom and latex. 

Anaphylaxis requires an immediate trip to the emergency department and an injection of epinephrine. If anaphylaxis isn't treated right away, it can lead to unconsciousness or even death. (via The Mayo Clinic) 

Your journey on Diagnosis Road 
When Ellery finally started eating food regularly at about 7 to 8 months old, I started noticing some reactions when offered bites of ice cream, yogurt, etc and one day when I gave her a pinch off a peanut butter sandwich (the bite itself was of the crust and had no peanut butter on it) she immediately broke out into hives and projectile vomited for several minutes. I knew then we must be facing 1 or 2 food allergies but looking back on my new mom self who felt she had such a good grip on this and was so emotionally prepared to face that road...I'd like to slap her. She was so naive and had no idea what we were about to face. More than anything I am probably just jealous of my pre diagnosis self and all my ignorant bliss. I reached out to my pediatrician who referred us to an allergist. We finally got an appointment with her previous allergist, before being sent to Cincinnati and our new team, when Ellery was 10 months old. He performed a skin test of the top 8 allergens and much to my shock, heart break, disbelief, bafflement, fear, (insert about 400 more emotions here) 5 of the 8 came back. I was prepared for maybe 2. not 5. So our allergist felt it best since so many came back positive and since Ellery was still reacting after a month of avoiding said foods, to do a blood draw to test for multiple foods. We finally had at that time a full list of 10 foods. That list grew to 15 plus penicillin. We then out grew 3 but gained all tree nuts so we're at about 20 at this time. 20 foods in the world that can kill my baby if she consumes it. A year after her original diagnosis my head is still swimming and trying to absorb it and understand. We're hoping to finally receive proper diagnoses for her GI and Endocrine issues before the year is over. We've been battling those demons for a year now with no solid answers. One thing her GI is planning to do is an endoscopy to biopsy and test for Eosiniphilic Esophagitis and Celiac Disease. He's fairly certain of the first but not sure on the Celiac. He more so wants to rule it out at this point. We may be facing growth hormone treatment with her if no other answers point to why her growth hormone levels are low. 

How does it affect your relationships? 
If this journey has riddled anything in our lives with complexities, confusion, and awkwardness it's relationships all across the board. We've had some friends back off and back out because it's just more than they can handle. I'm not angry about that. It's more than I can handle most days. Then we've had some friends close in around us in a circle of trust and protection that leaves me overwhelmed in emotion just writing about it. I sit here shaking my head with tears in my eyes thinking of each person individually who has gone out of their way to pour out so much love and support on us. Those that have tried to simplify our overly complicated world even a little bit. Those people, our village, they're what makes this doable and bearable. They're sent to us by God himself to make her world as normal as possible. They've changed their lifestyles, their childrens' lifestyles willingly and without begrudge or dread because they see Ellery more worthy of life than they feel themselves worthy of a certain favorite snack. How awesome is that? They're so awesome. I love them with all of me. Every single ounce of me oozes with affection for them. 

Having a baby, though, can strain even the best of marriages so throw in a medically complex kid who has been high risk since pregnancy and you have yourself a roller coaster of emotion in regards to your spouse. We've yelled, we've cried, we've fought, we've loved, we've laughed, we've made memories, we've made the most of it. We've yelled the word divorce, we've yelled we're done, but at the end of the day we grab each other close and come to the conclusion we can do this. God chose us to parent her together. He chose us in all of our imperfection to climb this mountain and conquer it. So we make the most of it and we make memories with our baby and we experience new things and we know that this is a season and when the season passes we want to recognize each other on the other side of it because we didn't choose to grow apart through it, but we chose to grow together in it. 

What is the hardest part?
The hardest part of this life is watching your child suffer and not being able to do anything to take it away. It goes against the very grain of your maternal instinct. My baby is sick and I can't take it away. Her immune system is forever weakened due to all of her allergies constantly raging war against her body and I live a revolving door of sick visits and antibiotics administration. Next to that would be the isolation. Even with that village surrounding us and encouraging us and standing with us, raising their shields of faith against ours to build an impenetrable wall against the enemies attacks, you know in your heart they don't understand and they don't know what this is like. To be a mom of a medically complex kid is to be in constant war both in the spirit realm and the world. I am forever on the front lines of battle for my child. Fighting for her acceptance, fighting for her safety, fighting for her life. Something as ridiculous as food can kill her. Not just make her itchy, or swell, or gassy... it will take my child's life without medical intervention and even then, its not guaranteed to work every time. Even with epinephrine it may not be enough and her life could be snatched from me. There's nothing easy about that.

What is an unexpectedly good part?
The most glorious part of this is I have discovered very early how amazing my daughter is. She isn't identified by her medical complexities. She is Ellery. She is fierce, bold, confident, brave, strong-willed, determined, discerning, silly, hilarious, affectionate, and mine. She is highly called by God. Every time I look in her eyes, regardless of it being because she's mine, I see something in them. I see the manifestation of God's power. I see a warrior I wouldn't screw with. She's going to change this world and bring God into it in a way it's so hungry for and doesn't even know it yet. Lives will be changed because He first stepped in and changed hers. 

The relationship I have with God now is something I wouldn't trade all of this for. I have walked with him in the cool of the garden at a level of intimacy many won't encounter because they don't know this level of trust and faith I have no choice but to count on. I have ugly cried on his shoulders, yelled, screamed, been angry, and thrown a tantrum that rivals my own toddler, but when I settle down in the quiet and sit and reach out He's right there to take my hand and pull me into Him to find my rest and renewing. He wraps me up in a slow dance while I lay on his chest and just breathe in the aroma of his love and let him envelop me in his goodness, faithfulness, trustworthiness, loving kindness, and adoration. The King of Kings adores me. What do I have to fear? He chases all that away in those moments and I stand up, brush myself off, and press on knowing who wins this battle. That is glorious. 

When people try to comfort you, what is your least favorite thing you often hear (even though it may come from a good, kind place)?  

The one thing that makes me the angriest is when people throw super churchy "slogans" or cliches in my face. I know they truly don't know what to say sometimes so they default to the things they've heard a hundred times but for me...I want sincerity and raw honesty in a moment of pain or weakness in this journey and not a line that they think would make the pastor proud. 

Are there any places you can't go and do you have any advice for how the world can be more inclusive? 
Obviously eating out is a no-go. How amazing would it be if restaurants started offering allergy safe menus that are at least free of the top 8 allergens and had a designated place separate in the kitchen that it's prepared and the ingredients are stored safely? That would rock. 

What do you want others to know about parenting/living with this diagnosis? 
If parents could just stop for a moment and imagine if that was their baby boy or baby girl in this reality of ours I'm sure they'd understand why we're so crazy. Why food allergy moms are so passionate. If they'd stop long enough to just gain some basic knowledge and understanding and relay it to their own children so much of that stress and anxiety and paranoia that we can never turn off could be lessened. 

Resources/sites/support groups you'd like to share? 
I learn a lot just googling on medical websites and pinterest lol. Also it's so important to reach out to other families that are living this to help bridge that gap you're feeling that no one gets it because we're out here and we do! Other food allergy moms have been a lifesaver for me to pull information from and just vent about how awful something is. Do not completely cut yourself off find our community and slip into your place and let us link arms with you to help pull you through this!