One of the most frustrating aspects of Noah's health is the not knowing. That poor baby has given up pints of blood for various tests that always come back normal. Our latest $1200 round of testing, all normal. That feels like an odd thing to say--that I don't want to have these tests for whatever syndrome/disorder/illness to come back normal--but if we knew what was wrong, maybe we'd know what to do. We'd move from trying to diagnose to trying to help him overcome. We'd be able to look at treatments that have worked well for other kids. We'd have an idea of what to prepare ourselves for. We know he has epilepsy, but that is just a symptom of something larger. I want him to go to school, make friends, have a happy life, all I want for Owen I want for Noah. Noah has learned early to be a fighter. He works so hard with me in therapy, if there is a way to overcome whatever is holding him back he'll do it--We just have to figure it out.--Amy
A little boys fight with Epilepsy and the family that loves him.
Thursday, May 14, 2009
Our Endless Quest
One of the most frustrating aspects of Noah's health is the not knowing. That poor baby has given up pints of blood for various tests that always come back normal. Our latest $1200 round of testing, all normal. That feels like an odd thing to say--that I don't want to have these tests for whatever syndrome/disorder/illness to come back normal--but if we knew what was wrong, maybe we'd know what to do. We'd move from trying to diagnose to trying to help him overcome. We'd be able to look at treatments that have worked well for other kids. We'd have an idea of what to prepare ourselves for. We know he has epilepsy, but that is just a symptom of something larger. I want him to go to school, make friends, have a happy life, all I want for Owen I want for Noah. Noah has learned early to be a fighter. He works so hard with me in therapy, if there is a way to overcome whatever is holding him back he'll do it--We just have to figure it out.--Amy
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That is truly the worst of it. I just wish we knew what to fix, and or accept so we know what our baby's future holds. I truly believe he will overcome this and be the happy, healthy, naughty little boy that he is meant to be. Love his Oma
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