Alyssa’s proteins suddenly improved again, putting her back in a safe remission zone. 👏👏👏 We hope it stays there.
We visited Iowa again, hoping to start her on a trial medication. Alyssa is doing so well that she is not eligible to start the trial. Should her proteins in her urine rise to a certain level, then she would be eligible. We are also now resuming weaning her off of the steroids.
Her hips still hurt. Cause still unknown. She started physical therapy. Physical therapist says it could be impingement or a muscle imbalance. Funny thing is, her brother also needs to start physical therapy for his heel pain, which started during cross country. His could be Sever’s disease or growing pains as pain is around the growth plate plus muscle imbalance.
at Orlando parks as their pain flared up.
“Best Sister Ever”
Her physical therapist showed me how the kids’ shoes lack some support, so we bought some new shoes and inserts “new balance sport active cushion insoles.” Apparently New Balance has good support, has a wider toe box, and offers Wide options for brother. Hopefully this will help with some pronation for both kids. When she wore new shoes with insoles, she was stunned that she could easily balance on one foot and said, “Ohhhhh, that’s why it’s called New Balance!”
Prayer requests: 1. Please pray for our friend with the same condition, C3G. He just received his 2nd kidney transplant, so pray that the kidney is not rejected, and that it functions well and lasts many years, to liberate him from years of dialysis. Pray for his medical team’s wisdom and guidance, and for his peace of heart and patience with this process. 2. That Alyssa’s proteins will stay low as she weans off of steroid. If not, then wisdom for next step. 3. That physical therapy and new shoes would help both kids. 4. Brother is searching for meaning of life, and he is asking some very deep questions. Pray for his spiritual growth and finding answers.
One in a Trillion: Alyssa’s medical journey 