Carson update

October 9, 2008 at 6:49 pm Leave a comment

Well, it’s a relief to finally know what is going on with baby Carson. It turns out after all that he probably never had botulism. Today the neurologist came in to talk to them about his muscle biopsy results. What he has is one of the 40 muscle disease under the umbrella of Muscular Dystrophy. Specifically it is called:

Nemaline Rod Myopathy

Of coarse, everyone in the family is upset, as it is awful to see Carson this way -having to be on oxygen and a feeding bag…poked and prodded. Yet he is always so happy and has such great spirit for a 6 month old.  It is heartbreaking to see his parents so fragile. I wish I could just wave a wand and make it all better. They will have a long haul ahead of them but we will be there to support them along the way and to give Little Mac lots of love and attention.

Thanks everyone who’s emailed and has been thinking about us. I’ll update more later on.

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Entry filed under: stuff.

Carson It’s Thursday? I am posting?

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The things we touch have no permanence. My master would say: there is nothing we can hold onto in this world. Only by letting go can we truly possess what is real. -Crouching Tiger, Hidden Dragon

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