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That's it...I'm raising the White Flag........

Posted Aug 25 2008 6:51pm

I am feeling so overwhelmed today. We just had Rhett's vision assessment. He now has such severe nystagmus that he is considered significantly visually impaired. So impaired that we now receive services from the Utah School for the Deaf and Blind .



Wow.



Wanna guess what caused the nystagmus to become so bad? I'll give you one guess........and it starts with the letter O ........



Come on..... I know you know it ........



Yup .....his overdose . Or, I guess I should say his lack of O2 when he was overdosed .



So in addition to his chronic lung disease , the bradychardia , the raised pulmonary pressures , and the possible neurological damage , we are now finding out that Rhett has significant vison problems . Nothing that glasses or anything like that will fix. He is permanently visually impaired.



All of these things are linked back to the " incident " as the doctors all like to call it.



All of these things we would not be dealing with if he had not been given a 10 fold overdose of pain medication while under a hospital's care.



So now on top of his PT/OT once a week, his ST twice a month, and all of his other doctor appointments in between, we are adding vision therapy once a week. This will help him learn how to work around his world not coming into focus, and not being able to see the detail of anything unless it is greatly magnified.



This kid needs a blackberry to keep his schedule straight. Today I am feeling like I just want to tell all of the doctors and therapists to go away and leave us alone. I have no idea lately whether I am coming or going. I can't tell you how many times I loose my keys and cell phone in a day. My brain cells are just gone.



You know how in cartoons you see the animals in a pile of rubble with the dust and smoke in the air, and they're waving their white flag?



Yeah . That's exactly how I feel .

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