Days 1 & 2 of the PPRC program are orientation & assessment/testing days.
After checking in at 7:45am, we filled out paperwork, met my head nurse, & got a quick tour of the facility. Each patient gets a head nurse assigned to them in order to coordinate their program experiences & track their progress (like a case worker). Additionally, those nurses are available at any time for questions or concerns. At the heart of the facility is a large atrium meeting area. This is where we check-in every morning and where the parents can be found hanging out in between lectures & meetings. The 2 photos below are of the central atrium & front desk areas.
For the kids, there is a large gym area with connected table desks, where most of their day takes place. Additionally, there is an occupational therapy room, a multi-room physical therapy area, a biofeedback room, and many other offices/conference rooms that are used for various meetings. The photos below are of the gym area:
I spent the entire first morning (8:15-11am) in cognitive testing while my mom attended her first Parent Group from 9-11am. Parent Group runs 9-11am on M, W, & F. This is where parents get together for program lectures and for question/answer sessions with the doctors and/or the attending professionals. This is also where they really get to know the other parents & hear their stories. My mom says that it is an amazing feeling to know that you are not alone. Almost 6 new kids arrive every week to the PPRC (there are rolling admissions/graduations). Almost every introduction with a new parent involves the need to process how much crap they’ve had to go through to get here. For most people, this is the end of the road in many ways … and most of the roads have been several years or longer.
I spent most of Days 1 & 2 in assessment/testing sessions. Aside from the several hours of cognitive testing & some blood work in the lab, I also had an occupational therapy assessment, a physical therapy assessment, a nursing assessment, a biofeedback assessment, & I filled out a computer survey for research purposes. Toward the tail-end of day 2, I was able to join the other kids for some group sessions and integrate my way into the program.