Adventure

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This is it…tomorrow is the big day.

I have been spending a lot of time looking over Brian’s food diary and trying to come up with questions to ask the doctors.  I’ve reviewed his medical history and given myself many pep talks.

This past week or so, Brian has had reactions, whether through a change in his bowel habits or hives around his mouth.  He has not had his regular appetite either.  I’m frustrated because I cannot pinpoint the cause.  He hasn’t eaten anything new and I’m afraid the safe foods are turning on him.  He also is drinking fewer bottles.

In response to these events, I go back over his food diary and make notations next to the possible culprits.  I force medicine into him and I pray endlessly that tomorrow will bring answers.

I’ve spoken a few times about Brian’s long list of food allergies.  At home, I have a white board on the fridge with the foods listed.  My hope is that anyone who comes into our house, whether to babysit or for a family party, will be able to refer to the list and help us to keep the unsafe foods away from him.

When I arrived back east, one of the first things I did was go to the store and buy a small poster board.  I then listed all of the unsafe foods.  This poster board follows us everywhere we go.

When my younger cousins have friends over, they even spend time looking over the list.  It seems to be a fascinating topic.

Below are Brian’s unsafe foods, as of today:

  • Dairy
  • Soy
  • Beef
  • Pork
  • Squash
  • Sweet Potato
  • Rasberries
  • Mushrooms
  • Peaches
  • Mustard
  • Cranberries
  • Honey
  • Coconut
  • Almonds
  • Pepper
  • Cashews
  • Celery
  • Chocolate
  • Lettuce
  • Oranges
  • Shrimp
  • Bell Peppers
  • Grapes
  • Olives
  • Spinach
  • Strawberries
  • Cinnamon
  • Pineapple
  • Bananas

When I say, “As of today,” it is because every new day brings the possibility of adding another food to the list.  Being adventurous involves trying a food he hasn’t had before, but then the next twenty-four hours are filled with anxiously watching for any possible signs of a reaction.

Tonight we are going to be adventurous.

It is rare for Brian to request a food he hasn’t had before.  He has learned that if it is okay for him to eat, then I will offer it to him.  But lately, Brian keeps asking for pizza.  This is bizarre because we really have not been around a lot of pizza lately, but he has it in his head.

We went to the store last night and I was ecstatic to find a dairy free, soy free, “you name it” free pizza crust.  This is awesome because I was going to just use Udi’s hamburger buns (the only safe bread we have found so far), but while reaching for the package, I spotted the pizza crust.  Unfortunately, the store did not have the safe cheese, but I’m not sure how I feel about a soy free, dairy free, everything free cheese, so this was not a huge loss.

Tonight Brian will have a chance to try pizza.  It may only have crust and a safe sauce, but it will be a new adventure and something I hope he enjoys.  I also hopes he doesn’t have a reaction.

Some may think I am being careless by giving him something new when I don’t know how he will react.  I guess I am looking at the possibility that my little two year old may not be allowed to eat food for months, and I just want to make him smile.  I want him to sit around a table with his cousins eating pizza.

I will have the epi pen, Benadryl and steroids close by, but tonight Brian will be a normal two year old to those peering in, and tomorrow, hopefully, our world will begin to change for the better.
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6 thoughts on “Adventure

  1. Just saying you are amazing doesn’t seem like enough. You are strong, powerful, loving, compassionate, tender, trusting, the world to your Lil Man and family. I wish you all well tomorrow. Know you are loved (especially that little guy of yours), Good luck with everything.

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  2. Hi,

    I hope that the safe pizza went well and that today is looking brighter! As a mom of a 15 month old with many multiple food allergies (current allergies of dairy, eggs, tree nuts, peanuts, coconut, wheat, oats, barley) and eczema, I can relate to this situation and your mixed emotions with it all. I know how difficult the world of food allergies and it sounds like you are doing an incredible job. Keep up the amazing work! I hope you don’t mind if I follow your story, Brian’s story. I hope that your world is already changing for the better today.

    https://smilingawayfoodallergies.wordpress.com/

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  3. Brian is the happiest looking little boy! What a brave soul he is Erin!!! I’m thinking of you guys, saying prayers and wishing you success. I know it’s hard on the family, but hopefully this will all be over soon and you can come home to Matt and Addy. Sending lots of hugs!💝💖😘

    Like

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