Monday, April 15, 2013

"I love you but snap out of it!"

Nothing says "I love you but snap out of it!" like a pair of pink atomic midcentury lamps! My little sister stopped by today with these lamps that are so very much me! She said I needed something to cheer me up and get me focused on something else, i.e.: stop moping around. Thanks Jess! I needed that! I know I have totally been mopey and self loathing. It didn't help that I was super sick forever with the worst ear infection known to man! But really I'm done with the self pity (for a while) I promise:) Time to be pro active! Time to find a some lamp shades for these babies! 

I have started Sadie on a Mito Cocktail and we have decided that she will have to do another muscle biopsy in the summer to get clearer results. A muscle biopsy really isn't the hugest deal in the world but Sadie reacts so badly to the anesthesia. Every time she has to go under it sets her mobility back a month or so but this is the only way to get clear results on the type of mitochondria disorder she has. After our unsatisfactory appointment with the specialist, Sadie's neurologist got us in right away to discuss the mess up with the previous biopsy and helped us move forward. Thus our next step of the mito cocktail and plans of forgoing easier testing that won't give us clear results and going straight to the muscle biopsy again.  It won't be fun but getting answers will help us know what direction to go with treatment.

 I have always said that I will do anything to find answers and make sure I'm doing all I can for Sadie. I am starting to feel like I may not get very clear answers and I need to be okay with that. It's becoming hard to balance treatments, quality of life and then feeling at peace with my decisions.  I wish I could say this muscle biopsy will be our last hurrah and if we don't get answers well then "it is what it is" but..... I'm not so sure 'm there yet. 


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