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| Xavier
Allan Hanrahan By: Jennifer Hanrahan |
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Xavier Allan Hanrahan
was born July 30, 1997. He was diagnosed at 3 months of age with septo-
optic dysplasia, diabetes insipidus, and has a cortisone defiency. He currently
is on Cortef, Phenobarbital, Synthyroid, Riboflavin, and Carnitine. All
of these medications play a big part for Xavier and his ability to function
daily. When Xavier was born he had complications also, so he's had his share
of being in hospitals. He's beginning to get use to them. He's seen almost
every kind of specialist there is and it still took all of the specialists
a week to figure out what was wrong.
When they finally diagnosed him all of our lives did a complete turn around. Xavier needs complete 24 hour care. He is starting to progress alittle. He actually eats very well now and is working on holding his head up on his own, even though every now and then he looks like a weeble-wobble; he tries very hard. He now responds to light and darkness. He needs a night light to sleep, but the opthalmologist say that he doesn't see actual people and objects, but possibly shadows. Even though that's not a whole lot to look up to, it's better then nothing. Xavier is a very active and happy baby. Some of his favorite things are playing with his puppy Dopey. Yes, he's alittle young but the doctors say it's good therapy. He loves it when his father or I, place him on his puppy and let him ride him like a horse. He also likes pulling the cat's tail too. He likes to feel different objects in his hands like a fluffy teddy bear or a jelly teething ring. He is a very quick learning child even for 4 months. All the doctor says he'll be slow in somethings but then alot quicker in others. Xavier is a wonderful child and I am glad to say that he is mine. When people findout that Xavier is blind, and with more complications than that they always say that they're sorry but I just tell them I'm not, and I wouldn't have him any other way. When they said that children with SOD had a contagious laugh and a smile like you've never seen, well that's an understatement. |
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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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