May 2, 2023. Keeping track.

Iowa doctor visit 4 is done. Nothing eventful, just the usual checkup: we bring 3 urine cups filled with “liquid gold” (gross, haha), blood draw and vitals are collected, doc answers questions, she gets her dose of medication infusion, vitals are collected afterwards, then we exchange old used vials of meds and get all new supplies.

Alyssa is often tired. Doc said that feeling tired is common in C3G patients, though exact mechanism is still a mystery. A lot of her C3G patients need naps. We hope that treatments will eventually help with this feeling. Adolescents are also often tired too, so she gets a double whammy.

I now keep a spreadsheet to track which side arm has been used, so she can alternate arms/veins. Rotating veins gives her veins a chance to heal, to decrease irritation, infection, scarring, and risk of collapsed veins. This is something to consider for her long-term future as she will often get blood draws.

Her school has been so good, so supportive, when I asked for a 504 plan (disability’s rights to education). Alyssa was complicated, but they pulled together a supportive plan. The plan asks for some needed support like if she needs extra time to complete assignments because she accumulates so many absences, or she may need counseling as being “different” while not looking different can affect her mentally/emotionally, or that she needs a specific plan of action for her condition. When Al and I walk out of these school meetings, we get misty-eyed from being so touched at how clearly they care.

When things go well, I sometimes forget her needs and push her to do too much. “Strive for excellence!” I forget she is medically different, and have to recalibrate my expectations. Sometimes she tries to meet these expectations. Sometimes she pushes back. Sometimes she shuts down. Then I see it. She shows so much patience, strength, and resilience through the long road trips, the endless doctor visits, the medications and all their side effects, the blood draws, the urine collections, the cough masks, my anxieties, and more. I realize she is developing excellent character. It’s pretty amazing to get a front row seat to witness this child experience life.