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My son, who is 3 1/2, has S.O.D. as well as many other medical conditions that goes along with that... Panhypopituitarism (His pituitary gland doesn't function) , Diabetes Insipidus, Seizure Disorders.
Anywhere, here is his story that I wrote... for a fund raiser we held in our sons name for our local Sight Center (Don't mind the website, I made it for my fiance and his basketball stuff... but the fundraiser was a basketball tournament we put on): http://stockmanbasketball.com/Taydens_Story.html
Anyway... I'm just hoping to meet a few other mommies of babies who have SOD, or ONH.
My son still doesn't talk, walk, sit on his own. He did just start holding his bottle on his own, and he finally will put pressure on his legs, not much, but it's a start. He has severe brain damage on the left side of his brain, due do his hydrocephalus being so severe.
Welcome. I am Jennifer, mommy to Alexis who also has SOD, though not as severely as your little guy does. She has pituitary deficiencies, though not panhypopituitarism (growth hormone, cortisol, and has hypothyroidism). We are monitoring for a slow developing hydrocephalus, and she has a high thin corpus callosum leading to moderate MR (though I don't know if I agree with that). She also has autism stemming from her SOD.
She is 6 now and in special ed. She disn't walk until she was 2, talk until 3 (and she still doesn't do that well) and isn't potty trained, we still have feeding difficulties, she just learned how to chew at 6 1/2. What kind of therapies does your little guy get?
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
Welcome to the board!
My son has ROP (retinopathy of prematurity). He is 4.. legally blind in his left eye but his right eye has good vision right now.. we travel to OK City every 6-8 weeks for an eye exam!
My son has ONH. He was diagnosed at 3mos and I was basically told at the apptment that he may never see and was then sent out the door. I went home to do some research only to find out what other kinds of things might be wrong with him because of where the defect is... I freaked.
We had no idea when he was born there was anything wrong with his eyes, we were putting him through terrible kidney testing because he had "hydronephrosis" in-utero. It finally resolved on its own after he was born.
Right after the initial diagnosis we scheduled an MRI to see what all was going on. The MRI was a nightmare because my son is like me... stubborn, and he wouldn't sleep for anything. Luckily the only problem they found was with his optic nerves.
We decided to do surgery to straighten his eyes at around 2 yrs old and I insisted on seeing an Endocrinologist before any kind of surgery, etc was done to be sure he wouldn't be in harms way with anesthesia. Surgery went well & what a difference!
He's now 5 and has since been diagnosed with a cataract in one eye (very small yet), and is wearing glasses for near-sightedness.... both issues unrelated to the OHN.
I feel very blessed after all we've been through that he went through preschool with very little extra attention and is looking forward to kindergarten this fall. I have some fears and reservations about sending him, but he loves kids and school so I have no choice but to let him go.
My biggest fears about school are that he get lost on the playground or get in the wrong line in school somewhere & get lost. When people move quickly around him he stops and waits and then finds his place, I could easily see him getting confused. He also needs a few verbal ques in the classroom.. preschool teacher says he would never start on a craft or paper until she told him he could. I'm going to talk specifically to his teacher as soon as we find out which one he's assigned and make sure she knows my concerns. Already talked to the principal... he wanted to know if we needed to fill out a "form" .. I assumed a form for them to get special assistance for him. I told him I want to see how he does in K before we apply for anything special. His eye dr told me he thought he'd do fine in K because much of the material is larger & brighter there than in later years.
I feel very fortunate after reading all of your posts that my son has so many less problems than I initially thought.