Last night was rough.
After the brush the teeth. After the story. After tucking her in bed. After cuddling with her for two of the songs on her CD she couldn't sleep.
Abigail is the worlds best sleeper. Always has been. When she as an infant I often thought, 'this is easy.' She was sleeping through the night after a few months. She took long afternoon naps and I nursed her to sleep peacefully and easily at bedtime.
She still is a wonderful sleeper but sometimes EoE won't let her sleep. Like last night.
She was sO tired. Tired from having a little cold. And after all of the bedtime routines we do she called me back in. Except that it was about an hour after I first closed her door. It shocked me.
"I can't sleep mama. The pain. It hurts so bad."
I know exactly what she is talking about. Eosinophilic Esophogitis can often cause reflux. So when she lays down the acid from her stomach goes into her esophagus and can cause a very real and awful burning.
I had some reflux (which was normal) when I was pregnant. I remember the burning just a little. Except that it's not just burning. Its reflux on a damaged esophagus. One with eight and a half years of white blood cells attacking the lining.
So I did what usually works. I started the long CD again and cuddled with her some more. I went to leave this time on the song I always leave with kisses and hugs on and she grabbed on to me. She was crying.
Daddy brought up the 'heat up in the microwaave' stuffed animal to sit on her stomach. I propped the pillows to help with the reflux and cuddled some more. It was late now. I was sure she'd fall quickly to sleep.
Blessed sleep means she can't feel the pain.
I was desperate for her to sleep. I prayed over her. I sang. I told her a story.
"Mama! I can't concentrate on falling asleep because it hurts so bad."
After all that didn't work I brought her into our bedroom. Maybe the distraction of a different bed would work.
An hour and a half later she gave into sleep.
Today she is fine. sort of. If she dances around (or when she lays down again tonight) she will feel it all over. She is oh so tired from sleeping from 11:30 to 6:30 am.
On Monday I will call her GI dr to see if there are any other meds that can help.
We woke up today with our first blanket of snow all over the ground. It was so pretty. She wouldn't take her eyes off of daddy snow blowing so I set up a quick bowl of cereal in the dining room where she could watch while I made french toast.
I'm grateful for the snow, and the distraction that it is. For good doctors. And for one faith filled girl that bears the daily, ongoing pain of EoE better than anyone I know.
I found this video today. What a beautiful family.