Today we worked with the physical therapist, Amilcar, at Camino Nuevo. We began with a more organized approach this time by figuring out which students needed to be outside versus inside to enhance their therapy session. We also included the staff in our interventions so that they could learn how to continue treatment once we leave. With the environmental dynamic we set up, we saw students respond better than they did before. This supports the sustainability we are here to create.
Later in the day, we divided into two groups for home visits…
Mica, Maddie & Sara traveled to the poorest area in Cusco today to provide consultation to a young woman diagnosed with Neurofibromatosis. This is a story that brought tears to everybody’s eyes in the room. In 2013, what this beautiful young woman didn’t know was how quickly her life would change. In high school, all the symptoms began: vomiting, dizziness, weakness. Her doctors had no idea what was wrong with her. A neuro specialist gave her the life changing news of Neurofibromatosis. His prognosis was poor, this diagnosis would take her life in two years. She proved them wrong as she continued pursuing her high school diploma and worked a full-time job. In 2015, a big tumor was found in her brain requiring surgery and eventually causing paralysis of her lower extremities. As we asked her what she hoped to gain out of our visit, tears began to stream down our faces. She wants to so badly walk and get out of the four walls that trap her daily. Her life is the same-she waits for the mornings and nights to come. She is only 23 years old and hasn’t been able to walk since age 20. So, we began with trial and error to see her capacity with movement. Our goal was to find the very edges of this capacity so we know where to begin promoting movement. In this situation, she is confined to a room, her bed and a chair, moving very little between the two. Our overall goal was to increase her movement by showing her what she is capable of doing independently while at the same time showing her family that she is capable of doing this on her own. Optimizing the transition from bed to chair and back is what we could offer at the moment. To further help, we took measurements of her chair, bed and wheelchair to better equip them to meet her need for movement. Next, we took a look outside. The front door led to a small patio with no ramp and a sloped yard with uneven terrain covered with rocks. This was where she kept her wheelchair, a standard wheelchair with no padding and flat tires. We did our best to make suggestions to improve the accessibility of the yard and comfort of the chair. We left feeling as though we provided her with a great tool to start. She’s got a long road ahead of her but we keep in mind that as therapists, we are part of a partnership in which we can only provide 50% of the work and she needs to provide the other half. It’s an experience that leaves you saying, “wow.” The family showed us out with these words, “por favor no nos olviden,” please don’t forget us. Today’s experience will hold a place in our hearts as we continue to pursue our career in physical therapy.
Nicole, Sam, Deb, and Mercedes taxied to the home of a 6-year-old boy who is a student at Camino Nuevo in the Multiple Disabilities program. His primary diagnosis is cerebral palsy and he has recently just started walking again after a year hiatus due to a fall that shook his confidence in mobility. He lives with his mother, who is a single mom, 4 sisters, 1 brother, and grandfather outside of Cusco in a 2-story home. The first floor of the home is the grandfather’s tailoring shop and the second floor has a kitchen and 2 bedrooms. When speaking with his mom, she expressed that her goals are for him to speak, improve his walking, and to run so that he can play with his siblings. We assessed his home environment and observed his completion of functional tasks such as stepping over obstacles, ascending/descending the 11 steps in the home, getting in/out of bed, and feeding himself with his hands. His mom also showed us the stretches that she performs with him on a weekly basis and a pair of orthotics that she fabricated herself. She also showed us strategies that she has been using to motivate him to walk, the biggest one of all being music. Overall, we were impressed with the environment she has created for him and the dedication she has to improving his mobility and functional activities. Given this information, we focused on refining his stretching regimen because we believe that his shortened hamstrings are one of the major contributors leading to his habitual W-sitting and inefficient gait pattern and alignment. However, since hamstring stretching causes him a lot of discomfort, we recommended gentle night splinting to supplement his stretching, which we will fabricate ourselves and provide for him. In addition, we provided his mother with home exercises to strengthen his trunk and lower extremities. It was a great opportunity to observe this student in his home environment to gain insight we couldn’t have gotten at the school. Given his current level of mobility, his ample family support, and his motivation to interact with typically developing children, we communicated to his mother that his prognosis for improved mobility is favorable. This experience solidified the importance of acknowledging parent effort in caring for their child.
~Mica, Maddie, Sam, & Nicole