Here is more information on Eleanor’s conditions/diagnoses:

  • Schizencephaly
    2nd Rarest brain malformation – it basically means a portion of the brain is missing
    Eleanor was born with less than 1/3 of the brain tissue of a normal brain
    *At 4 mo old, her grain miraculously grew to almost a complete brain! Although still abnormally structured, she is missing only a small portion of her brain according to her latest scan!

  • A large brain cyst

  • No Corpus Collosum
    The band of nerves connecting left & right hemispheres of the brain so that they work together- vital for anything requiring coordination- ie holding anything with both hands, walking, etc etc
    *Her latest scans show a partial (about 1/3) of her Corpus Collosum – another miracle growth!

  • Hydrocephalus or “water on the brain”
    Eleanor had an excess of CSF (cerebral spinal fluid) fluid in her skull which developed in utero
    This required her to be born via c-section because her head was too large to be born vaginally
    She had a shunt placed at 4days old which drains the extra fluid from her head into her belly

  • Bilateral Anophthalmia
    Missing both eye balls- completely blind

  • Septo optic dysplasia
    This condition is defined by three characteristics including underdevelopment of optic nerves and pituitary gland and abnormal formation of the midline brain structures
    Eleanor’s brain is abnormally structured (meaning things are not where they would traditionally be- at the very least a complication for any brain surgery) and she is completely missing her optic nerves (so has zero light perception)

  • Holoprosencephaly
    Rare brain malformation where the left and right hemispheres of the brain failed to divide in utero
    *this diagnosis has been removed from her medical file because of brain growth & development that occurred after she was 4 mo old.

  • Craniosynostosis
    Characterized by the premature fusion of any skull sutures
    Most babies with this diagnosis are born with this condition- in Eleanor’s case, her condition is secondary, meaning she developed it after birth (due to a malpractice situation with a surgeon)
    Although only one suture fusing prematurely is still craniosynostosis, in Eleanor’s case, ALL of her sutures fused prematurely, requiring her to have a craniotomy surgery to allow for expansion of her brain (due to miraculous brain growth).

Eleanor’s diagnoses list is quite long! Though not a complete list, this shows how very miraculous her birth and LIFE is! She is a true warrior! She was fearfully & wonderfully made by God. Eleanor is loved & adored by her family just as she is.

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