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.
Emma Bear's Journey 