Physical Therapy After Gene Therapy
Therapy

Secret Physical Therapy

After Gene Therapy, I remember the doctors and nurses specifically telling us to NOT to do Physical Therapy (PT). However, as a Special Needs Educator, that recommendation did not sit right with me or my husband. We knew early intervention was the key and its importance is drilled into us as educators.

From the health care standpoint, no one certain what the results would be or if PT was safe immediately after gene therapy. We knew our daughter very well and knew the importance of intervention that we were willing to gamble and make our daughter the guinea pig. The gamble paid off.

Rylae was ready physically, but the mental aspect took time. While we worked to build strength in her muscles and keep her moving, we paid close attention to committing to a schedule. We always began and ended each session with smiles. During the session, we did our best to keeep her motivated.

I remember even lying to the the doctors, and telling them that she did do any physical therapy. We secretly started our sessions nine days after her gene therapy surgery. In hindsight, I believe we could have even began sooner. She had surgery on the 13th of November and on the 22nd, a regularly scheduled physical therapist came to our rented home in Taiwan.

This was by no means a painless or effortless process. Rylae screamed her lungs out. While we tried our best to keep her happy, we also watched along. We wanted to learn strategies and have “homework” to do after the therapist left. That way, when she came again, Rylae would be closer to making progress and moving on to the next sequence.

First Physical Therapy after GT

"During the PT sessions, Grandma and nanny couldn’t watch Rylae go through the pain. They oftent wanted to step in and cuddle her. Truthfully I did too, but I told them to back off and that Rylae needed it."

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