We went to an amazing lake for Mother’s Day! We all had an amazing time! Eleanor really CAME ALIVE though! She loved when the water would splash up on her. She kept feeling the water, rocks, & pebbles/sand. She was exploring & chattering & squealing with delight! And oh my, how big she’s getting!
Published by Faithforeleanor
This is a blog for those who would like to follow our miracle girl, Eleanor Faith. Eleanor’s primary (but not only) diagnoses are: 1. Schizencephaly (2nd rarest brain malformation- missing 2/3 of her brain) 2. A large brain cyst 3. 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) 4. Hydrocephalus (water on the brain) 5. Bilateral Anophthalmia (no eye balls- completely blind) 6. Septo optic dysplasia (no optic nerves & etc) She was also diagnosed with Holoprosencephaly (another rare brain malformation where the left and right hemispheres of the brain failed to divide in utero), but this diagnosis has been removed from her medical file because of brain growth & development that occurred after she was 4 mo old. At this time, her brain also miraculously grew from less than 1/3 of a brain to almost an entire brain (with only tiny portion still missing). She has also developed about 1/3 of her Corpus Collosum (previously she had none). Around 8mo old, she also developed secondary Craniosynostosis (all of her skull sutures fused prematurely) due to medical malpractice by her surgeon. This caused her head to be misshapen & she required a craniotomy to allow room for her brain growth. Eleanor was not expected to survive birth, but at 2 years old, she is thriving, happy, & filled with spunk! She was fearfully & wonderfully made by God. Eleanor is loved & adored by her family just as she is. 😍 You are invited to follow her journey! View more posts