Aug 18, 2025. Chugging along.

Ah. I haven’t updated in a year 😏. Medically, there’s not much to update. She has been doing well on the trial medication, pegcetacoplan. She has been blissfully living as a normal child for the past year. ☺️

Not gonna lie, I really enjoyed not updating this blog for a year. No more inquiries about her health. No need to struggle with crippling anxiety and fear of the future. No fear of stressing relatives out about her health. Just waking up each day and being thankful that she has good friends. ❤️

So thank you for your prayers. 🙏 Thank you God for answering these prayers. Our faith has, is, and will be continuously tested. We are thankful for how God has shown us that there is no guarantee of tomorrow, and how we have been able to change our lives accordingly. Previous years, I had been determined to take Alyssa around the world, for fear of her future deteriorating condition and difficulty with traveling. With her excellent health, this summer had been a moving summer with special trips. She went on a Youth Group mission trip to Kentucky and worked HARD. She got to visit Japan, a bucket-list item for her. She went on another missions trip to Mango House, an orphanage in Chiang Mai, Thailand. All have been special trips with deeper meanings for her, opening her eyes to other parts of the world both in wonder and to see needs out there, while making new friends and laughing at funny, charming little kids who like to twerk. 😂

Now onwards to her new school!