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| Kayla
Day By: Debbie Day |
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Kayla
was born August 12, 1991 with an Apgar score of 1.
She required bagging with oxygen and vigorous stimulation and was delivered
with a fractured clavicle.
An endocrine work-up suggested hypopituitarism, with a CT scan suggestive
of Septo-optic dysplasia.
She was discharged from the hospital at 3 weeks of age on maintenance
doses of Synthroid and Cortef.
After months of loving care with her foster parents, Frank & Donna, Kayla joined our family at the age of 15 months. It must have been quite a shock for her to go from a quiet household where she was the only child to our family where she immediately gained two brothers and three sisters! Kayla, soon to be affectionately labeled the "Velcro kid", bonded like glue to mom (day AND night!). Now at age six, she has seen fit to let others into her immediate world but she still shares a deep affection with me. It's been interesting for us to raise two children with SOD. (Our older son, Timothy (now 14) is also adopted and has been diagnosed with SOD) There are many similarities but also differences. Both children are blind, have left-sided weaknesses and obsessive/compulsive behaviors. They both also deal with sensory issues, though Kayla's seem to be more pronounced She can go from being a fun-loving, easy-going child to a demanding, clingy, fearful child lashing out at all around her, at the drop of a hat. The worst part of this yo-yo behavior is that it seriously affects her learning. During her "highs", she is an eager and quick learner but when that is broken up with periods of "down" time, it doesn't make for very consistent learning. Kayla and Tim receive weekly sensory integration therapy to help deal with their hyper-sensitivities to touch, sound and smell. Our hope is that in time these sensitivities will decrease and Kayla's world will be more balanced and enjoyable. We homeschool Kayla (as we do Tim and two other siblings) but receive in-home services from the school district for braille and orientation and mobility. Our family now boasts one more member—older brother, Larry (11) joined us within a year of Kayla's adoption. Their relationship is really quite special and has been a joy to watch develop. |
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This website has been
designed to help empower parents of children with ONH/SOD. All the information
herein is subject to opinion. If you suspect your child may have ONH/SOD
it is recommended that you seek professional advice from a certified pediatric
ophthalmologist. No one individual or company connected with this website
assumes any liability or responsibility |
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