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Apr 28-May 04

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Last week Cast turned 6 months old, and we made some big strides in managing his care. Our amazing pediatrician referred him to the SOAR clinic at Texas Children’s hospital and we had our first appointment on Wednesday, Mar 24. The purpose of the SOAR clinic is to coordinate care through a Developmental Pediatrician for kids like Cast who see multiple specialist and therapist. They use a team approach and during our first visit we actually saw 2 doctors, 2 therapist, and a dietician who all worked together to come up with a specific plan of care to get Cast the best outcome. We were also referred to other specialists that consult with their team. Yesterday, Mar 31, Cast had an appointment with the neurologist and will soon see the ophthalmologist, rehab medicine  specialist, and GI specialist.

 
The neurology appointment went extremely well.  After her initial exam and questions for us, the doctor gave us the official diagnosis of Dystonic Cerebral Palsy.  This type of palsy is a movement disorder marked with hypertonia- increased tone and uncontrollable, involuntary posture and movement.  Dystonic Cerebral Palsy is a direct result of  the damage to his brain during birth.  He does have painful uncontrollable movements that affect his sleep, eating, and ability to just feel comfortable and relaxed.  This sounds scary, but it actually left us both feeling very hopeful.  The likelihood that he will have any cognitive impairment is very low and there are tons of medications, therapies, and adaptive equipment to help get him to where he needs to be physically. 
 
Please keep Cast in your prayers as we start the journey to manage care for this diagnosis and work through medication changes.  We are so excited to see what the future holds for this special guy!

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