Strength in Time

The trip to downtown Chicago takes but an hour for us, as we make our biannual trip to Lurie Children’s Hospital for Ella’s clinic. This one was an eye-opening experience.

Every six months, the neurology, pulmonary and therapist team members get together and see their shared patients in what turns out to be a three- to four-hour appointment. They rotate from room to room, getting a glimpse into what’s happening with their patients and making recommendations for continued maintenance. Measurements are taken, questions are asked and answered, and progress ― or the lack thereof ― is documented.

Ella has had four doses of Spinraza (known as her loading doses) and her next one will be Nov. 29 (her first maintenance dose). She has shown progress in strength and endurance since starting the therapy. Her team of doctors, nurses and therapists are well pleased with her progress and are excited for more of the same.

Her strength increase is primarily in the upper torso of her body — her head, neck, chest, arms and core. She now is able to lie on her stomach and push up with her arms. She can lift her hips and almost get herself on her hands and knees. She can roll from stomach to back and vice-versa. She has better control of her head and neck and her energy and endurance is markedly improved.

One improvement that took us all by surprise was that she was able to lift her head while lying on her stomach and having her hands held to her side. This is a certain sign her core is getting stronger.  

With Spinraza being a new drug on the market, we can only wait and see what other, if any, improvements will shine through. We wait, we hope and we live our lives in gratitude to those who engineered such a wonderful treatment for SMA.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.