Emma Bear

This is the story of my little Emma bear and her journey from birth to now. She’s a beautiful 13-month old girl with hydrocephalus. Her entire list of diagnosis’ over the last year are as follows:

  • Premature Infant of 35 weeks Gestation
  • Post Hemorrhagic Neonatal Hydrocephalus 
  • Macrocephaly 
  • Plagiocephaly
  • VP Shunt Status
  • Epilepsy 
  • Sensorineural Hearing Loss
  • Neural Pattern Hearing Loss Bilateral
  • Right Congenital Muscular Torticollis
  • Hypotonia-low muscle tone
  • Early Closure of Fontanelle
  • Metopic Craniosynostosis-Fronto Orbital Advancement with CVR 
  • Cortical Visual Impairment
  • Decreased Visual Tracking
  • Monocular Extropia of Right Eye
  • Dysconjugate Gaze
  • Astigmatism
  • Strabismus-crossed eyes 
  • Hyperopia-blurry vision 
  • Gross Motor Delay
  • Delayed Developmental Milestones 
  • Assymetric Crying Face
  • Pathogenic Deletion of Chromosome 6q26q27-very rare genetic disorder that is linked to a multitude of issues

    Please feel free to ask questions or leave comments about any of these issues. I’d love to know what your experiences have been with them. 

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