t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Tonight I twisted kleenex after kleenex into Ellery's ear (while she cried because it hurt), and pulled out thick, bloody, infected fluid, I couldn't help but feel my heart sink. My Ellery is such a trooper. Sometimes I wonder what it would be like to live in her little shoes.

Berkeley will know too well.

I wish it wasn't the path set for her.

I was so disappointed today, we tried a 12 hour on demand feeding today. Berkeley did two feedings in a row and then just tuckered out and wouldn't eat a thing.

I asked the doctors and nurses to stop using the BBG on her. How will I know she can survive at home, if they are using a tool I don't have access to? We will see how she does. Her oxygen needs seemed to be rising through the day, but maybe they will come down again.

The "chart note" doctor was very evasive with me. He can't seem to admit that he didn't understand her completely when he admitted her. He is on again tomorrow. I wish he wasn't. I appreciate the candor of the other neonatologists.

I do feel like we will slip through the cracks again. It doesn't appear they will follow through. I hope I will be proved wrong. I will continue to push for them to make contacts for us.

Berkeley had such a great nurse today. It makes all the difference. She helped me deal with everything so much better, even emotionally. I was very appreciative of her and her care and communication.

It has been fascinating to see the fluctuation in my pain tolerance move in sync with my emotional stability. A weak emotional day like yesterday, left me with more pain in my incision than I have felt in some days. Today, stronger emotionally. Stronger physically. Another testament of the power of the mind/body connection.

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