Focus Families
About FOCUSONH BookletCharacteristicsCommunicate For Support  Medical Articles and LinksResearch NewsletterBirthdaysGlossary Meet our Children Inspirational PoetryFamily HomepagesHelp I Just found out my child has ONH/SODWe love Email  drop us a note:)
  Toll Free Parent Support 1.866.FOCUS.50 between the hours of 8 am and 5 pm PST
   
   
 

 
   

Abby
By: Cindy

   
 

Abby Rose was born october 1992, and we met her a month later when she became our daughter!

From the beginning i had a bad feeling . She was our fifth child and i knew babies were not this good!!! She never cried on waking never cried when hungry. We could not get her to smile except once in a while and her eyes bounced back and forth very fast. it was a scary time. the eyes were to clue. So we packed her up and took her to the eye docs and she told us Abby had very small optic nerves, optic nerve hypoplasia and would never see a thing.

When i asked to what i was to do she said take her home and love her. I was scared . Abby sees rather well with her right eye now and has learned how to use the vision she has very well. .

We followed that visit up with a trip to the neurologist and a MRI. It showed that Abby had no septum pellucidum, thus she was diagnosed with septo optic dysplasia or S.O.D. Abby has one seizures to this day ( knock on wood) . She is hypotonic in the lower part of her body and uses a wheel chair and walker to get around.

Then the next step was the endocrinologist . Lots of new things to learn for us!! Abby had no endocrine problems until she was about 2 years old. Then her pituitary didn't work so well anymore . She is currently on ddavp, growth hormone, cortisone and thyroid. Right now we battle with her weight and I have yet to figure out why. Also we learned that it also has affected her hypothalamus which controls her sleep , appetite and body temperature, to name a few. We have not had problem with this except occasionally.

Abby is the beautiful little girl in the picture that is making you laugh right now!!!:) She has the funniest sense of humor and a great imagination and the most contagious smile. She has allowed our family to see a miracle in progress!! She loves beginning braille. She goes to 2nd grade. She is somewhat delayed because of vision issues but she is catching up quick!!:) We love her so much and we are soooo proud of her!

 

I Love you from Abby!

 

 
   
     
 

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
for it's contents.

© copyright 2000 - 2006