This blog began when our then 14 month old son, Landon, was diagnosed with a rare, metabolic disease called Cystinosis. He is 1 in about 2000 in the world. We have come to realize that this was only a chapter in our book so this blog will share all of our adventures.
Monday, October 8, 2012
All Clear...
I am shocked, pleasantly so... Landon does not have crystals in his eyes yet. I told his nephrologist that I feel like we are pushing our luck here.
Yesterday after I posted and shared the blog, a handful of people in the Cystinosis community reached out to assure me that the crystals really are an easier part of Cystinosis and that all will be okay.. I appreciated it so much. I cannot explain what their (the crystals) presence means to me. I think, for me, it's about more than just putting eye drops in his eyes. Or maybe that is it... I'm not used to Landon putting up a fight with anything medical. It makes compliance easy. Yeah, maybe that's it.
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