5 days until liftoff

0325 days to go until we leave for National Jewish Health’s Pediatric Day Program in Denver, CO and writing this just to have a way to keep all of you, who have been so instrumental and supportive in us going informed.  I hope this is a good platform for doing so.  I’d like to keep you in the loop while we are there, and it’s a lot easier to do this on the iPad.I can add pictures. And we all love pictures.
The last 6 weeks have been the toughest of our lives with the itching, sleepless nights and lack of solutions. We’ve dealt with this for 4 years but it seems somehow intensified recently.  The avoidance of food allergens are nothing in comparison to eczema.

We’ve tried every lotion, cream, ointment and snake oil.  Zoey still itches despite our best efforts to contain her in a bubble.
She’s four and has lots of energy like any other kid her age and we have to constantly limit her.
No hands on the floor without gloves. Don’t let your skin touch the grass. Don’t even think of going near that cute little kitten, or puppy. Don’t touch the door. Touch nothing in the store.
Don’t touch my hands- I haven’t washed them. Don’t touch that gift, library book, pen, toy that’s been outside, table top until I’ve washed it. Don’t nap on the couch without a newly washed sheet.  I’m hiding your stuffed animals. I’m washing and drying them. I’m freezing them.
It could be the grass, pollen, mold, dust, weeds, rabbit hair, old cat dander, residue from someone’s shoe, garlic, onion, cross contamination, heat, sugar, acidity, cold,humidity, known or unknown food allergen that’s making her itch.
Let’s wash it, clean it, apply steroids, apply cortisone, give benadryl, manuka honey, Zyrtec, slap some coconut oil, dose Claritin, probiotics, wrap it, throw in some salt and vinegar.  And why the loose tooth? WHY the loose tooth?
These are all words that have passed our lips in the last week and she still itches.  Zoey made it through a total 3 hours of daycare this week. We tried each morning before she started itching so furiously that the open wounds would fester if we let it go longer.

Have you ever seen that painting The Death of Marat?  This image comes to mind lately during the many baths we give Zoey, and I  wonder if he had eczema. (He didn’t die of his skin condition-that’s a whole separate story. He just spent a lot of time in the bath because it was the only thing that relieved his skin symptoms. He did everything in the bath water,hence the parchment)


12 responses to “5 days until liftoff

  1. Beautifully described. It’s clear how incredibly essential this opportunity to learn more is right now. And amazing despite all these challenges how much her joy and curiosity are always so ever present. You’ve worked so hard to create that for her.

    • Thank you Caroline! She’s really excited about Denver so hoping the new places, experiences and people outweigh any of the challenges during the visit.

  2. I am so happy that Zoey is going to get the medical attention she needs in a few days. It’s so important for you to track this experience not only for Zoey and yourself but for all of us to understand what you’re dealng with. Zoey is so smart and so happy, despite all of her trouble with allergies and that is because of how you and Garland care for her! Can’t wait to read more about this journey!

  3. Like the comparison of Zoey’s bath times with the Death of Marat of Marat. . . . poor little angel, it’s so good that you guys are doing this for her. Can’t wait to read more about your journey, best wishes!

  4. Thank you so much for creating this blog! I’ve been missing you guys so much since I left and I feel so connected to Zoey, you and Garland right now. It’s amazing to me how you have transformed this difficulty in Zoey’s life into a path of increasing and enduring health, strength and even fun. In your parenting, you use such an extraordinary mixture of playfulness, nurturance, creativity and wit that reaches deep into the imaginal world of 4 year olds, to instill such an undeniable resilience that will serve Zoey for a lifetime, beyond these circumstances. I am so happy that you will finally be connected with people who are doing real work around developing knowledge and skills to deal with eczema and allergies in a more strategic way, and that you will have this opportunity at this stage in her life. I love you guys and look forward to reading your articles along the way!

  5. Thank you for sharing with all of us what you, Zoey and Garland have been going through in beautifully described detail these last six weeks that has overshadowed and is in addition to, the allergy problems for the last 4 years. I don’t think anyone can really know what daily life is like there for you unless one is living it. I heard bits and pieces of it before but this really gave us a slice of daily living and your thoughts and experiences with eczema and allergies. A Zoey is smart, happy and very healthy due to you guys constant loving care for her. We’re all cheering you guys on to National Jewish Health and will be following you along, hoping, praying for the best outcome for all of you and going through it with you!

    • Thanks Dad. You’re the one who gave me the idea yesterday when I was thinking about how to keep everyone updated. You said “USE TECHNOLOGY”. The IT gods would be proud:) Thank you SO much for the support. Means everything to me. Feels good to get it all down too so I can organize my thoughts before I go and speak about Zoey’s health history to all the wonderful specialists we’ll see.

  6. Just got done watching the video’s that you had linked up for the “gold standard” food challenges being done at Nation Jewish Health. It was very informative and hopeful!

  7. Hey Steph, thanks, the IT gods hear you! – Ha! You are a very organized person and you did a great job with starting this blog with a detailed journal of behavior so that these specialists can do their best job for Zoey and the both of you!

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