Logan is also legally blind. He attends a school for the blind and is in the first grade. He recently brought home his first award, for outstanding achievement in counting! He is learning to read Braille, and to our surprise managed to teach himself to read some large print words! We didn't realize he could see the letters! No one worked with him, so he taught himself! At birth, he didn't seem to be able to see anything at all, but his vision has improved over time, as so many aspects of his life have. Logan's vision is mainly from the lower quadrant of his right eye, and he does not have depth perception. He is supposed to wear glasses, but his sensory integration problems get in the way. He hates his glasses. He has had many surgeries to correct his cleft lip and palate, and has many hospital stays related to illness and his endocrine deficiencies. His biggest surgery of all is still lurking in the future.

Because of his medical experience, Logan doesn't think much of most doctors. And most of Logan's doctors have no idea what to think about him. He is a medical mystery. Logan has been diagnosed with Optic Nerve Hypoplasia, partial panhypopituitarianism, Septo Optic Dysplasia, bilateral cleft lip and palate, agenesis of the corpus callosum, sensory integration disorder and expressive language delay and a few other things. Those are words that attempt to describe Logan's medical conditions. But, Logan has a rare combination of rare disorders. This combination affects many aspects of his life, not just his physical health. We have not found a doctor or a team of doctors yet than have been able to address Logan as a whole child. Logan does have a number of very good specialists at Primary Children's Medical Center, to whom we owe an endless debt of gratitude.

Logan has some very good endocrinologists who oversee his hormone replacements. He takes hydrocortisone daily to stay alive and also thyroid, growth hormone and testosterone supplements.

Logan receives joint sensory integration and speech therapy. When he was younger, he was extremely sensitive to sounds, foods, clothing and crowded places. He had very little tolerance for change. His reactions to these stimuli could be described as autistic. He's gotten much better with these things, thanks to an excellent sensory integration therapist and some maturity of his own. He responds very well to brushing, and vestibular input like swinging and being thrown around. Deep pressure and tight hugs help Logan calm down.

Logan's speech progressed normally despite his cleft, until he was 2 1/2 years old. He quit talking after a procedure for his cleft. He uttered only a few words over the next three years. This turned out to be the hardest, most regrettable and most frustrating of all Logan's challenges. There is nothing more frustrating than not being able to communicate with your child, and knowing he can't communicate with you or his world. No one could offer a reason he wouldn't or couldn't talk, and no one had any answers about how to help him. We tried sign language (after Logan started signing to us!), picture boards, everything! Nothing helped enough. Then, on Mother' s Day 1998, he gave me the best present I'll ever receive! He sat me down in front of his favorite Barney video and started pointing and naming everything! He said hundred of words. He said words I didn't know he knew and he pointed to things I didn't know he could see. Hundred of words were pouring out, one after the other, after three long years of silence. Logan is a miracle.

Because of Logan's conditions, he does not sleep much. He only seems to need 4-6 hours of sleep a night -- less on a bad night! Thanks to a very kind and understanding neuropsychiatrist, Logan has recently been given some medication to help him sleep. Much of his first two years of life were spent in the hospital, a few days in, a few weeks out. But, as he's gotten older, he's been able to stay away from the hospital. His first two years were very challenging medically, his next three years were very challenging behaviorally, and now he's seemed to settle into what suits him. Logan has been mostly healthy the last few years and has made outstanding progress in many areas. I'm so proud of him. Logan is a gift to all that know him. He has changed our lives for the better and shown us things that no one else could ever have shown. He has shown us pure love, pure joy, and shown us what determination and strength really are. Imaging learning these things from your Childs example. But, Logan has done all that and more. In his own smiling words "Logan can do it!"

What a beautiful baby!!

Logan's reason for living!!THIS IS LOGAN(except for the sleeping part)

Logan, 4,and Uncle John - a definite favorite-getting thrown around

Logan's 6th birthday with his Dad:)-He chose Mexican food & the park

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.