Well our Finnian is in the hospital again. This was a scheduled visit he got hooked up to the EEG today and tomorow he goes for his spinal tap. The are testing him for a metabolic disorder. They are pointing to one but they are hoping this will give them the answers they need to say yes he has.........
We are not the only family on this journey to find the "name" for what our children has. Will it give us the answers we have a name for their disorder or will it put us on another path "oh no he has that".
The best thing we can do is love our child for who he is and provide the best care that we can for him because he did not ask for this. The best is if we get a "name" we will be able to hopefully go in the right direction for treatment. It won't make him normal but hopefully make Finnian progress if not then thats the Big Man's wishes.
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