The New Normal

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We’ve been in the clear for about 3 weeks now, and it seems that the biggest challenge of all was the flares in and around colds and infections.  We are still giving baths once daily and haven’t needed topical steroids for almost a full month.

Our typical day without flares still feels challenging, but the adherence to routine is worth the lack of itching.

On a typical school day , we wake up and immediately apply a wet washcloth to all areas of the body and follow with heavy Vanicream.  She is dressed in 100% cotton clothing recently hot washed, extra rinsed and dried from head to toe. She is given preventative asthma and allergy medication to help with the many environmental allergens she’ll encounter during school.  I apply lotion several times after that, right up to 15 minutes before we leave for school, when make sure to apply sunblock on her face, even on a cloudy day.

Each day we supply school with daily laundered washcloths, nap socks for her hands, clean nap blanket, sheet for her nap mat, and her allergy free lunch and snack.

When I pick her up from school I always carry socks, washcloths and a small bottle of water in case she is itchy during the 15 minute ride home  from school (which hasn’t happened for over a month). And of course the Epi-pen, just in case.  When she arrive home we change clothes, wash her hands, apply a wet washcloth to her face and moisturize.  I check her for tight breathing, which is sometimes evident after school.  We end the day with a good filing of her nails, nasal rinse and 20 minute soaking bath, application of Vanicream everywhere and 100% cotton clothing head to toe. Z will sleep with socks on her hands to prevent unconscious itching.

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It’s a lot, but it’s working.  If I start tiring of this routine, or if Zoey asks me if we can skip something and I feel guilty for all this intensive preventative treatment (which happens quite often)  all I have to do is bring up a a couple baby pictures or pre-NJH photos to remind why it’s worth it.

In an attempt to avoid everything that might make her flare (ingestion and contact to any of the 10+ allergic proteins in egg, milk, wheat, peanuts, tree nuts, sesame, garlic, cat hair, dog hair, animal hair for the most part, grass pollen, dust, various molds blah blah blah) we are left with very few places and see very few people.

I struggle daily to keep my anxiety in check while letting Z experience the world around her to the fullest.  The blessedly cool weather has made this possible. Z refused a coat before she could speak, and can tolerate much colder temperatures than Garland or I can. We experience cabin fever in the summer, and get most of our vitamin D in the winter.   These days we’re outside in the woods behind our house day and night, and this somehow feels less isolating. We’re choosing to be in a place of silence and calm.

We’re looking forward to Halloween, easily Garland and Z’s favorite holiday.  I’m dehydrating beetroot and crushing charcoal in a (hopefully successful) attempt to create some safe, non-irritating Halloween makeup. Patch tests for various hypoallergenic brands haven’t been successful.   Zoey will be, of course, Mavis Dracula and her father will be Count Dracula from Hotel Transylvania. I’ll be Johnny.

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7 responses to “The New Normal

  1. Wow, such an incredible routine you have in place to prevent the flares, and it totally looks like it’s paying off! Her skin is glowing and looks so healthy! I’m in awe and your continued energy and creativity, Zoey is one lucky girl 🙂 Hope you guys have a fun Halloween, take some pics!

  2. I love, love the expression on Zoey’s face in the first picture on this post—so her. Glad she is doing well and I haven’t forgot about the legos. Again, this world would be a much better place if there were more parents like you. XOXO

  3. I know the daily preventative work can take so much both physical and emotional energy. I know also in these moments the feeling of isolation and uncertainty that comes with this journey feels deep. It is in these moments that I hope you remember that this is the incredible love you are giving to zoey through each and every routine of protection and care. Through touch and care you are weaving a web of nurturing that she will only fully understand as she grows. And that in the midst of aloneness, you are held, as a child of the universe, and by those that love you.

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