Oct 14 is FPIES Day

It’s Global FPIES Day.

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Today I am reminded about the screaming and arching, vomiting and diarrhea, sleepless nights, horrible bum rashes, and awful mucous filled diapers with specks of blood that have been a part of Miss A’s first year. However I am choosing to think about how I’m grateful we received an early diagnosis and a helpful knowledgeable and supportive medical team.

I think about how much time I spend cleaning the floor and scanning for crumbs, at home and especially outside the home. I’m nervous to take my girl to other houses and buildings not knowing is she will find food she will react to. However I am so thankful for family that understands and watches out for her, and big sisters that try their hardest and are carefully taking care of their baby sister.  I am also so thankful that she has not had a violent vomiting reaction since her diagnosis.

I think about how I have been hungry and extremely tired and bored with my limited diet, but yet so thankful that I have food to eat and the ability to make life sustaining milk for Miss A.  I have a new appreciation for the depth, variety and flavors of our foods.

I think about how Miss A is currently limited to 8 foods, yet I’m so thankful that she is excited to eat and happily chows down a tonne of food, oblivious to the variety she is missing. I adore how she stands up next to her high chair yelling to be put in, or how she yells loudly when she finishes all her potatoes, wanting more.

I think about how in 4 months she has gained less than 1lb. At one year she is sitting at 16lbs, approx in the 3rd percentile. However I am thankful that she is not losing weight, that she is still soft and squishy, she is still happy and otherwise healthy and developing well.  She is a busy, talkative girl learning new words all the time. This week she now says, “All done” after eating and “Sit down” while daringly standing up on her chair.

I think about the time I spend reading labels, phoning companies for hidden ingredients, searching for how certain ingredients are made or sourced.  I am thankful that the information is out there, I am thankful for google (haha) and thankful for my FPIES support groups that a full of knowledge. I am very thankful for the increasing number of companies that are creating food products that are clean without cross contamination, that are non-gmo, organic, without additives and have helpful customer service. I’ve learned many new things, like cream of tar tar is a residue left over from fermenting wine, so it is sourced from grapes.

It has been a stressful and exhausting year. The constant awareness, hyper-vigilance and self restraint is draining. However I am thankful that we are making progress however slow it may be. I am thankful that Miss A’s sleep is drastically improving, which has done wonders for my mental health.

I am so very thankful for Miss A, FPIES and all.  My heart swells as I watch her play and learn. I love and adore her so much, I would do it all over again and not change a thing. Her challenges have given me a strength, determination, and discipline I never knew I had.

 

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