There are the symptoms of Krabbe and then there are the side effects of those symptoms.
Babies are born with loose joints for good reason. It’s through the process of resistance gained by kicking, rolling, crawling, and weight bearing that allows their joints and bones to set. Kenan was a strong little boy but started loosing muscle tone around 6 months. He never made it to sitting up. Because of this there are skeletal (and internal organ) consequences: his hips never set and are migrating out of their sockets, his spine is starting to curve in the direction I typically hold him, his fingers are now hypermobile (double jointed) to name a few. These orthopedics are designed to help prevent and correct misalignments. From top clockwise: hip brace worn at night to set joints, knee stabilizers that help support his lower body when I hold him in a standing position, AFO’s for foot alignment and ankle strength when standing, resting hand splints to help relax the hand muscles as well as align the bones. Each of these is worn daily and some in tandem for various durations of time.
Babies are born with loose joints for good reason. It’s through the process of resistance gained by kicking, rolling, crawling, and weight bearing that allows their joints and bones to set. Kenan was a strong little boy but started loosing muscle tone around 6 months. He never made it to sitting up. Because of this there are skeletal (and internal organ) consequences: his hips never set and are migrating out of their sockets, his spine is starting to curve in the direction I typically hold him, his fingers are now hypermobile (double jointed) to name a few. These orthopedics are designed to help prevent and correct misalignments. From top clockwise: hip brace worn at night to set joints, knee stabilizers that help support his lower body when I hold him in a standing position, AFO’s for foot alignment and ankle strength when standing, resting hand splints to help relax the hand muscles as well as align the bones. Each of these is worn daily and some in tandem for various durations of time.
And the reason his orthopedics rock our world: a chance to hug.
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