Wednesday, November 9, 2011

Today I'm up late reading about scary PWS stuff, and I know I shouldn't be. It just stresses me out :(

I am worried about Ellie's sleep study results. I wonder what is going to happen with regards to her starting growth hormone. Will it make her apnea worse? Are we putting her at risk? What are the benefits to starting in December, versus waiting until she's older? What are they going to do about the apnea? Surgery? Monitors? Oh god, are they going to put monitors in our house?! Is she going to go back on oxygen, or bi-pap, or cpap? Or nothing? So many questions, my head is spinning.

I am hyper-aware of her apnea episodes. They are terrifying. And, she's oblivious.

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