July 12, 2023. Waiting.

It’s a long wait until October, which is when she gets the medication for sure. We are halfway through the blinded period. Because she feels icky and tired on an unpredictable schedule, I eagerly let her rest and ditch any extracurriculars. Her fatigue was becoming more regular, where she needed a nap. Now that it’s summer vacation, magically she barely needs naps anymore. 🙄

She experienced vision distortion. For example, when she looked at a door, it looked like it’s shrinking, growing, shrinking, growing. Hooray for Pearle Vision and a quick optometrist appointment! Her eyes look fine, and maybe it’s a migraine aura or something. It got better, so we will wait and observe to see if it happens again. Alyssa’s health is always keeping us on our toes. Throughout the weeks she experienced rounds of dizziness and headaches and need for naps. At another point she got blurry in one eye.

She got to meet another C3G patient! It was nice for her to meet someone around her age with similar struggles. They happened to have appointments next door to each other. We had been dragging our feet about letting her meet other C3G patients, but it’s time to move forward. Alyssa has been invited to be a panel speaker at a C3G conference this fall, to share about her experience with the trial. Surprisingly, she decided she wants to, even though she’s terrified of being put in the spotlight.

I have been taking steps to move out of my anxiety. I’m finally letting the kids unmask in a lot of places. I’m constantly listening to every cough or scratchy voice.

Recently I got a head MRI for some headaches. It turns out that I have a lesion on my pituitary gland. I ran some blood tests to check my hormones, which seem to be normal. Possibly a microadenoma. I’m still unsure of my next steps, as I wait for my appointment with endocrinologist.

The backstory on this is a Roman centurion asked Jesus to heal his servant, “Lord, I am not worthy to have you come under my roof, but only say the word, and my servant shall be healed.” Jesus speaks highly of his faith (despite not being from Israel) and says, “Go, let it be done for you as you have believed.” Servant was healed long-distance. I want the faith that this centurion had. God, please say the word. We pray also for our other family and friends, for their healing.