Zoey and I woke up in a wonderful mood after sleeping until 7:30. Wet wrapped her face last night and she slept right through without pawing at her face once. I know this because I am unable (despite earplugs) to sleep through scratching. My confidence, mood and her skin is restored.
Dr. Leung told us early on that Zoey needed something to do with her hands so yesterday we picked up our first Lego kit and she’s was hooked all morning.
We discovered many environmental allergies while at NJH, a big one being both types of dust mites. At this very moment, Garland is back in NC cleaning and culling the house of every piece of fabric that could harbor mites, including her beloved stuffed animals and dolls we hope to donate. ThIs might sound harsh, but if we can control an irritant we won’t hesitate. There is so much we’ll never be able to control in her environment, but at least we can create a healthy home environment for her skin to heal.
We had breakfast without hives in the Ronald McDonald eating area, which is a first in this land mine of allergens and met with the dietitian at 11. This appointment came so late because this service is something not automatically included in the day program, and must be approved by insurance. I’m hoping that’s a good sign for bills to come.
Zoey’s basic bloodwork showed no red flags, and her height and weight are right on track from birth. We reviewed her diet and the dietitian saw no nutritional deficiencies, except that it would be helpful for her vegetable palate to expand.
This comes as a huge relief after years of intense worrying that avoiding eggs, milk, wheat and nuts were doing harm and would put her at risk for future illness. I even wondered ( a couple times in desperation) if her diet was causing her eczema. We discussed some really novel strategies for getting her to willingly be near vegetables, rather than me hiding them in her food which has seemed to backfire.
Finally at noon, we had our discharge meeting with Dr. Leung and Dr. Lanser. In the last few days I’ve received drafts of the care plans to review as the team updated them so I could familiarize myself with them and prepare questions along the way, so nothing came as a surprise and I was fully engaged. Every instruction was clear and understood which is so important when you are dealing with an illness that is wholly up to the caregivers to manage.
We fly home tomorrow and are looking forward to seeing Garland.
I’m so grateful for the Ronald McDonald volunteers’ nightly feast I raided late each night after Zoey went to sleep, and the millions of small acts of kindness that are routine here.
Zoey is very sad to leave and every time someone asks her if she’s ready to go home she bursts out crying. She’s enjoyed talking to everyone that will engage her in a polite hello, and then going off in her imaginary tangent. Tonight she begged me to stay and said she’ll even do 10 nasal washes. What kid wouldn’t love a playroom at every turn stocked with the best toys?