Preparing For a Week of Changes

Clearly Lily’s “acute” stage continues to improve with talk of moving her out of PICU to the Neurology Rehabilitation unit (downstairs) early next week. But Lily’s recovery work has just begun. Her days are very busy with physical, occupational and speech therapy. She constantly alternates wrist/hand splints and therapeutic boots to help reduce muscle toning. She also receives innovative acupuncture and acupressure from a hospital contracted practitioner whose husband is a Pediatric Neurosurgeon & Ph.D. here at CHOC. In a serendipitous moment this husband and wife team also from San Clemente immediately recognized Lily’s last name on the patient board as they know Jimmy’s sisters Shannon and Sandy from their tennis club.

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Lily’s busy days can leave us feeling a bit overwhelmed and we are finding it difficult to accommodate all the visitor requests. We know interaction with family and friends is crucial in Lily’s recovery but the priority now is periods of quiet, non-interrupted rest-time. Please know that there will be a time in the near future but right now visitation remains open only to family. Doctors have strongly advised Jim and I to take a break from living at the PICU. As much as we struggle to leave Lily for even five minutes, we will go home together for a to improve with talk of moving her out of PICU to the Neurology Rehabilitation unit (downstairs) early next week. But Lily’s recovery work has just begun. Her days are very busy with physical, occupational and speech therapy. She constantly alternates wrist/hand splints and therapeutic boots to help reduce muscle toning. She also receives innovative acupuncture and acupressure from a hospital contracted practitioner whose husband is a Pediatric Neurosurgeon & Ph.D. here at CHOC. In a serendipitous moment this husband and wife team also from San Clemente immediately recognized Lily’s last name on the patient board as they know Jimmy’s sisters Shannon and Sandy from their tennis club.

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Lily’s busy days can leave us feeling a bit overwhelmed and we are finding it difficult to accommodate all the visitor requests. We know interaction with family and friends is crucial in Lily’s recovery but the priority now is periods of quiet, non-interrupted rest-time. Please know that there will be a time in the near future but right now visitation remains open only to family. Doctors have strongly advised Jim and I to take a break from living at the PICU. As much as we struggle to leave Lily for even five minutes, we will go home together for a few hours. Please keep us in your thoughts and prayers as we walk inside our home for the first time in two weeks. My sister is helping us with taking photos of her room as we prepare to leave the PICU. We will add them to her photo gallery Sunday night.

Thank you for leaving messages of words of encouragement and prayers for sweet Lil, we couldn’t get through this without you.

-Jim and Les

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