The holiday break validates our mission to maintain the acute level of rehabilitation. The level of care for an inpatient stay is 18 hours weekly. When we moved home, we fought for 15 hours of therapy which we received from our school district and private insurance. Currently Corey receives 4 hours of PT, 4 hours of OT and 4 hours of ST weekly as an outpatient through the district and Medicaid (we had to drop 3 hours due to the commute and her fatigue). The hours will be approved as long as she continues to show functional improvement.
We supplement the 12 hours with an hour of stretching twice a day on her “off” days along with home therapy such as standing at the sink to clean dishes, cooking, personal care practices, etc. Corey continues to walk throughout the house with maximum assistance from me but it is not quite the same as working with Jen and Natalie!
During a normal week, Corey’s leg and arm movement is fluid. If our schedule changes and she does not receive the skilled care from her team, we see a big difference in her ability to walk within a 24-36 hour period. Her left leg hesitates, her left knee locks up and her left toe drags as she begins to walk “like Frankenstein”. To off set this, we try to stretch 3x a day on vacation days and take laps around the kitchen and family room. Although Corey has become my personal trainer, this is difficult for me physically as she now out weighs me and my body/back is often pushed to its limit. In addition to our therapy schedule changing, our staffing needs for nurses is still uncovered. This also contributes to my fatigue and diminished stamina.
The holiday break brings to mind the families I am beginning to work with as an Advocate. We have challenges but there are thousands of families that have much greater daily struggles. Many families do not have coverage for therapy. Some receive a maximum of 3 hours of therapy per week and most do not qualify for nursing assistance and are forced to care for their loved ones alone in addition to working and caring for their family.
Brain Injury affects 1.7 million people annually; greater than any newly diagnosed cancer. Awareness of the need for increased care, research to improve care as well as educational training of skilled professionals is critical for survivors and their families. Brain Injury is not an event or an outcome. The brain is not a bone that heals in 6-8 weeks. It is a life long recovery that requires dedication, motivation and funding to support the skilled professionals and assist survivors fighting to regain a healthy, independent, satisfying life.
Now that the election and holidays are over it’s time to get back to work! Harrisburg and Washington here we come…xoxo