Breathing Battles

Kyrie has endured a long night of fevers and bad breathing to say the least, but still wanted to be with Alex for morning violin practice.


Do you see her purple hand?


When he is finished, we get out her tiny violin for her to practice… do you see her profile, where she is outgrowing her lower jaw and chin? The more it recedes like that, the more she struggles to breathe.


She “plays” violin when he is done, getting ready to be in the symphony with daddy someday.


In that picture, it’s a foot taking the brunt of not enough air:


This is her life, though, and she wants to play even when she doesn’t feel well. She tries so hard!


No matter how sick she is, there is no way, she says, that she is missing out on a ride in the car, even if that’s just to drop off brothers at school.

Even when we have to pretend, because she can’t actually get out in this weather and still breathe.

Red lips are better than blue lips, so we are making progress this morning.

Last night she was vomiting froth, which is always her confirmation of escalating respiratory distress.

For a month now, she has slept like a newborn, almost. She does sleep all night, but too much, from about 530pm to 7am, and then is up for an hour and a half and goes back down to sleep three hours in the morning.  Then she’s up for an hour and a half, and goes back down to sleep three hours in the afternoon.  Then she’s up for an hour and a half, sometimes two, and then down for the night.

That’s all the energy she has, and she’s trying so hard.  We have her on monitors, giving breathing treatments and medicines for breathing and fever, and playing classical music at the tempo we want her heart to beat and lungs to breathe. We are all doing our best.

Posted in Family, Life, Music permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.

Comments

Breathing Battles — 3 Comments

  1. I don’t know much about music so could you post about music temp and finding what it is?