Ryan’s Miracle Watch 9/1/16

I used to most look forward to the weekend. But now I most forward to Thursdays, when I can hang out with Ryan. It’s not often that we, as parents, get to hang out with our children for more than just a few minutes at a time…if even that. So, I cherish the time I can spend with him.

Tonight we’re listening to some music, watching a little TV (probably some football) and sitting in the quite of the moment. In between, I’ll be getting him his medicine, turning him every couple of hours, feeding him, blowing his nose, taking his vital readings every hour and generally keeping him as comfortable as possible. Yes, it’s work, but work that I love and take pleasure in doing…

Colossians 3:23a   Whatever you do, work at it with all your heart, as working for the Lord…

One thought on “Ryan’s Miracle Watch 9/1/16

  1. Hi! I really look forward to your posts everyday…It’s hard to tell by your pictures what kind of bed Ryan is in that you still have to turn him? My boyfriend is in the Freedom bed which turns him automatically and it really helps keep his lungs clear and saves my back and prevents bedsores…love it! And i recently switched his feeding tube formula from pulmocare to “liquid hope”…we are going on 2 years now and hoping for some new medical treatments…I would like to hear about the Tobii eye tracking device you got for Ryan when you have the time…Warmly, Vicki

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