Grace for Rett » Grace's Life with Rett Syndrome


Finally MRI day happened. After 3 previously failed attempts (vomiting, snowed in, etc etc) Grace got her much needed MRI. She was a trooper and didn’t whine until coming out of sedation. Not even when she missed her breakfast due to fasting since dinner the night before.

There was a scary moment, though, when the doctor came out to tell us that we couldn’t see her yet because they’d had trouble with her airways. In the most ‘doctory’ way possible, she said that her airway closed when they took out the breathing tube and they had to ‘open it up’. When we heard her cry, they said we could go in and there was blood on the sheet and in her mouth. I wish they would just say what really happened. It scares me to think that I might not be getting the full story but I understand why they sugar coat everything they say.

Nonetheless, we are looking forward to getting her results in a couple of weeks and she is back to normal and fast asleep in her bed.

reblo - January 22, 2010 - 8:04 pm

I read your blog avidly; it is so engaging and beautifully presented, both in the narrative and through the images you capture. Your experience is all too familiar; I too, have a daughter with Rett Syndrome.
Grace is beautiful and your words and pictures honour her experience.
Elizabeth, if at all possible, I would like to contact you directly.
Thank you.

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