Rena's comfort is the primary focus now; she's highly medicated or sedated much of the time. Currently, Christian and Hannah are managing gas bubbles, which cause immense pain, and neuro storms. Neuro storms, a complex reaction in her brain that triggers pain signals and distress, require constant care and medication application. It's a full-time nursing role for Christian and Hannah, with meds administered every couple of hours.

Despite the challenges, Christian and Hannah remain remarkably resilient and loving. Their sleep is minimal, reminiscent of newborn parenting, with Rena (and Peter) waking at night.

If you're in Illinois and wish to help, please use this SupportNow platform to sign up for meals or offer assistance with tasks such as dishes, laundry, vacuuming, playing with Peter, driving Peter to appointments, and, of course, holding Rena. You can also suggest other ways you can assist that haven't been mentioned. For instance, during my recent visit, I took Peter and my son Micah to the trampoline park, giving Christian time to install equipment for Rena.

Another example occurred as Christian tackled the formidable task of snow blowing; Rena was in the midst of a neuro storm, requiring immediate attention. He had to return to help out rather than finishing the task at hand. Even mundane tasks become a complex dance for parents, and the winter storm added an extra layer of difficulty for Hannah and Christian. Their resilience shines through even in the face of everyday challenges.

Their endurance, both physical and emotional, is awe-inspiring, and your support in words, donations, prayers, meals, and love means the world to us. Thank you for being part of this community.