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| Ellen (resident), Linda (Ella's PT), Ella, and Mary Massery |
The effects of SMA reach far beyond what the eye can see. As Ella grows, so do the complications associated with the disease that ravishes her muscles, taxes her patience, and elicits questions that no child should have to ask.
About 6 months ago (October, 2012) we had a routine check-up with Dr. Prestridge, Ella's Pulmonary Specialist. We spoke mainly about general respiratory health and bipap settings. Of course a physical examination of her chest ensued. One thing the doctor noticed was a small protrusion at about the center of Ella's chest. She said this was typical for people with weakened muscles. She then proceeded to refer us to a highly recommended physical therapist who specializes in pulmonary/respiratory PT.
Her name is Mary Massery.
Mary Massery has a vast wealth of experience and expertise in terms of pulmonary/respiratory health. She has been in practice for 20+ years. When we called for an appointment the first available was over 3 months out. They couldn't even schedule us. We were told to call back in two months. We did. The scheduling was available 4 months out and the date of March 20, 2013 was available...we took it. A total wait time of 6 months to see Mary. In addition, her services are not covered by insurance...the cost was well worth it, however.
The appointment lasted a total of two-hours. We sat with Mary and had a wonderful conversation about Ella. Her complete history, her strengths, her weaknesses, our hopes, and our questions. Mary spoke with us with grace and compassion, knowledge and sensitivity.
She made recommendation for feeding schedules which we will discuss with Ella's SMA Team at Lurie's Children's Hospital. She gave advice about travelling, the SMA Conference, the general health and well-being of a person with a neuromuscular disease.
Of course, the physical exam came next. We were a bit apprehensive about the protrusion that Ella has developed. Mary, once Ella was down to her diaper, took one look at the protrusion and smiled. She said it looked "great". Great?? What does that mean? I thought.
Apparently the protrusions such as this one can occur one of two ways. The chest cavity can expand out or sink in. If one were to have a protrusion one would want to have the kind that expands out. It allows for more breathing room and indicates that the chest muscles are not as weak as one with a sinking protrusion. Ella has the expanded type protrusion. The size of the protrusion is also a factor she looked for. She was absolutely not concerned at all with the size of Ella's.
She performed many manual tests on Ella's chest, ribs, diaphragm, and back. She took measurements, she drew lines on her body, she took pictures, she laughed and giggled, tickled and played with her. They had a grand 'ole time. In the end, she was very pleased with Ella in terms of her pulmonary/respiratory function given the disease she has.
She was kind enough to also show us how to manually "cough-assist" Ella if need be. It was kind of weird doing the procedure because in doing so, you can feel her ribs and chest cavity. The natural thought is that one might "break' something in there...but the more I did it and from watching Ella's reaction, the concerns quickly fled (see video).
All in all, visiting Mary was extremely beneficial to us as Ella's parents. We learned much about the pulmonary/respiratory care Ella needs and will need, we walked away with more ways to help her, and we feel more confident in working with her on a daily basis.
Yes, SMA presents challenges we never dreamed a child could go through, let alone our own...but there are people out there who work so hard to help so many. As this disease progresses, and it will, our job as her parents is to love her, care for her, and be with her...through it all.
