The actual Challenges: the ones we flew to Cali for!... And, a couple others
Finally time for the patch! Thursday morning El and I went into the clinic for a quick appointment to get her 24 hour patch on. El was excited, and slightly unsure. She was happy to talk with the nurse and discuss all the patch – but the second she saw the patch she was scared and concerned. She froze and said she didn’t want to do it anymore.
The nurse was FABULOUS!! She walked her through what it was and explained the stickers were not needles (like the last time she was there she got pricked with lots of needles). The nurse even saw a small ‘boo boo’ on her foot and said she could make it better with a bandaid (insert mom eye-roll but I knew what she was doing). This helped El immensely and then the nurse explained the patch would feel just like a bandaid – it was perfect. I wish I could remember her name, because she loves what she does and does it extremely well – thank you!
We left the clinic with patches ALL over El’s back and headed back to the hotel. The ‘Patch Test’ are multiple pockets of food (38 specifically for El) that get placed directly on the skin. They are in small pods with direct contact on the skin and held on with medical adhesive – like a bandaid. They need to sit on the skin for 24 hours without exposure to the sun, heat or moisture. So, we had another restful afternoon – we drove around while the kids slept in the car and we checked out different sights and places to go. El was a trooper with her patches – they didn’t seem to phase her a bit – except the fact she couldn’t go in the pool!
The next morning the whole family headed to clinic where El had her patch kit removed, we discussed the trajectory of the program with the doctor and El dosed her first foods in the office. Success! The appointment was long and detailed, I am thankful it wasn’t just me there taking in the information, processing the daily needs for the next 4 years, and trying to tend to the kids at the same time. Though we go to California every 3-4 months for treatment, a significant portion of the program is completed at home with daily tasks morning and evening. This affects everyone in the home and close caregivers – it’s very important to have other ears listening to this information with you!
After discussing all the information, El’s allergen scale and the multiyear plan, we were excited to decompress with the weekend of fun. We were going to hike Solstice Canyon, beach it up in Malibu and walk the cliffs in Newport. These happened, just in lesser fashion as both kids ended up with a minor GI bug and El had a mild reaction to something and had to take Benadryl. Our weekend was spent with me in complete panic and concern mode, both kids taking it easy and minimal activity. Sunday night came and we once again took a round of COVID tests to ensure all was still well and confirmed with Clinic El was still OK to proceed with Monday dosing (phew!!).
Monday through Wednesday appointments went great! She challenged three more foods and dosed four. She passed challenges for sunflower, pumpkin seed, millet, brazil-nut, pine-nut and cashew. Her dosing of camels milk, coconut milk, quinoa and pea protein went great and moved into her treatment food list! We departed the clinic on Wednesday with our list of maintenance foods, treatments foods, recommended brands and big bags of pre-dosed gummies and cups of portioned flours to take on our way. We did it! We completed five days of appointments successfully amongst the obstacles that seemed to plague us headed into this. El had successfully completed her first official visit, with sister (and biggest supporter) in-tow.
At this point I was ready to be home. In an environment I could control. Between new places, activities, foods, myriad of health obstacles, I just wanted to level the playing field. Be in an area I could control. Yet there was also unease about filling this playing field with new tasks and foods – from morning maintenance to evening treatment, we would be giving El foods that directly affected how her body worked. And, we live at best, 60 minutes to the closest hospital. Not sure how I thought this was better, but it is what I know, and there is comfort in knowing.
One more challenge and we would be on our way to our #foodfreedom journey at home – traveling back to Boston to drive home. Have I mentioned the anxiety for a food allergy parent in airports and on planes? You are confined in spaces with significant food and no easy way out or to help. Yeah. Nothing fun about that for a food allergy parent. So, to pile on to this trip El ended up with hives on her face after we got through TSA. F***. Was my exact thought. We instantly gave her Benadryl to see if they would subside quickly or not – they did! We had a little over an hour until boarding and we closely monitored her the entire time. With no further reaction and hives dissipated, I reluctantly boarded a night flight with two very tired kids and what appeared to be lots of hungry passengers (all carrying takeout food bags). I’ll spare my anxiety here – but I can say it was high and I did not sleep a second on the redeye into Boston. We made it safe and sound. We ended up waiting an hour and a half for our shuttle bus but that’s a story for another day that just compounds this trip. I’ll spare you more to read ;).
Aside from what had felt like a constant uphill climb, we are ecstatic for the future this program can provide for our daughter and our family’s wellbeing. I think all the obstacles we faced that heightened the anxiety on this trip just reassured us how incredible it will be to remove some of these hurdles from our daughters future. <3
Cheers to Visit 1 complete, and 13 more to go! Thanks for following along and all the encouragement El receives from this wonderful community!!
Xxoo
Ash
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