Orion: Choosing Wisely
June 2012 Issue
Whether you believe in pre-destination is not the point. What matters is that Orion Waters Landall (that his initials spell "owl" was intentional) was born to a family that has the knowledge, patience, love, and fortitude to embrace him and address and fight for his needs and proper care, including his weakened muscular condition. "He picked us," says Landall of her 13-year-old son, Orion. "Good for him, because he knew who would find his way for him."
Orion was born in Tobey Hospital, Wareham, Massachusetts. His lungs were full of meconium, so within two hours of his birth he was airlifted to Children's Hospital Boston, Massachusetts, which had a neonatal intensive care unit (NICU) and was better suited to provide the care he needed, says his mother Diane Landall. He also was diagnosed with global hypotonia. "In delivery, Orion presented himself pretty much as he is now," Landall says. "His Apgar score was within normal range, but very-low normal due to hypotonia."
Having global hypotonia means that every single muscle in Orion's body is low strength, so all his developmental benchmarks were delayed, Landall explains, although he did reach them by age four. While some parents might consider their child having been in the NICU to be bad, Orion's mother looks at the bright side. "Going to Children's NICU opened a lot of doors for my child...," she says. Having been in the NICU at birth allowed Orion to receive early intervention and be seen by a range of specialists from the time he was born- which might not have happened otherwise because Orion's Apgar score had been considered in the "normal range."
With guidance and assistance from the early intervention care team-physical therapists, occupational therapists, nurses, neurologists, orthotists, pediatricians, and personal care attendants-the Landalls had to teach Orion even basic functions. They had to teach him how to swallow, they had to strengthen his eye muscles and his tongue, they had to strengthen his neck so he could hold his head up (something he still has difficulty doing for very long), and they had to exercise his brain and work on his reasoning, among other things. Of special significance is Harry Webster, MD, a pediatrician who also specializes in physical medicine and rehabilitation. It was Webster who suggested that Orion be fit with a Benik Brace TLSO at the age of four and then suggested the DM Orthotics Dynamic Movement Orthosis (DMO) TLSO that he wears today.
Orion began preschool at the age of three because children in the early intervention program are automatically enrolled in the public school's special education preschool program-which was before he started wearing a TLSO. Because of his weak musculature, Orion is not able to sit for long as the effort fatigues him. Thus, Landall says she agreed to have Orion fit with the Benik Brace that Webster suggested when Orion was still in preschool.
"Dr. Webster is right on top of his game; I will sing his praises forever," Landall says. "He described what [the brace] does: Orion wears it tight to his body like skin, and when his body fatigues... the body would relax and...would run against resistance of the brace and it would make the muscles re-engage. That made perfect sense to me."
Orion wore the Benik Brace until 2010, when Webster suggested the DMO TLSO, which is made of a Lycra-based material that is lighter weight than his prior orthosis, so it is not as hot, it wicks moisture away from the body, reduces odor, and is more dynamic.
An alternative to rigid bracing, DMO TLSOs are custom made, and the strength and orientation of the line of pull all depend on what the orthotist is trying to accomplish, says Orion's orthotist, Nicholas Ricardi, CO, National Orthotics and Prosthetics Company (NOPCO), Weymouth, Massachusetts. In this case, the DMO has allowed Orion to sit for longer periods, helps address his abnormal gait pattern, helps to abduct his legs, and decreases his hyperkyphosis, Ricardi says. The TLSO also includes the shoulder girdle and upper arm so shoulder protraction is reduced and head control is improved. While Orion can sit up "quite well" without the TLSO when cued, Ricardi says the DMO's intimate fit and tactile stimulus of the material provides a proprioceptive response, and the added paneling provides the biomechanical force to help direct the desired movements. In other words, the DMO helps to position Orion in a more appropriate manner so he can get through his daily activities.
Landall says she is happy with the DMO TLSO and how it helps Orion. "He came into the world with a good body.... In order to [maintain it] you always have to be consistent with the pressure, you have to make sure the [DMO] is worn correctly and...fits him." An added bonus is that Orion "loves" to wear the DMO, Landall says.
Wearing the DMO TLSO, however, does not preclude the continual work necessary to improve or even just maintain Orion's strength.
A Family at Play
Because "it takes an exorbitant amount of exercise to get minimal results" for Orion, Landall says that from the beginning the family has turned the constant work of strengthening Orion's muscles into play, which helps tremendously.
Orion is the youngest of three boys-his brothers are ten and 15 years older than he is and both are athletic just like their parents. His father, Erik, enjoys bike riding, fishing, and working out at the local gym, and Landall says she has been swimming and doing yoga since she was 16 years old-the latter of which she is now certified to teach. "Using the body is actually one of my fortés," she says, which is one reason she believes Orion picked her to be his mother-another is the increased patience she has that came along with being an older mother. She was in her 40s when he was born.
Like his older brothers, Orion learned to swim as an infant. By the time he was 18 months old he was able to do the doggie paddle, Landall says. He was also and continues to be constantly encouraged to engage in his surroundings and move his body in one way or another-all of which is therapy disguised as play. A house full of boys meant an action-packed house. Orion's brothers would get down on the floor and play with him. The boys' friends would even get involved-they would hide from Orion and call his name so he would have to crawl across the room to see who was calling him.
Even today, "I fool with him, play with him, do this, do that, we're always moving, moving, moving. Look over here, look over there," Landall says. "You're physically moving his body and then you're having him move his body...but he thinks it's this big game."
And, cognitive delays aside, like most teenage boys, Orion likes to play and be active, his mother says. He attends school. He likes to interact with people. He loves to sing and dance. He goes to the local gym daily where he rides a stationary bike, uses the rowing machine, and swims. Given his early start in the water, "He's a wonderful swimmer," Landall says. And, because the Landall family lives just minutes from the beach, they often go there on walks.
"I knew some things were just going to take time [with Orion] because I understand the biology of the body," Landall says. "To me, every stone we upturn solves problems or gives us some leads." Together, the Landalls continue to find their way.
Laura Fonda Hochnadel can be reached at