High Chair

Look who sat in the big girl chair today!

   
    

  

 

She is doing so great on eating!

She struggles with other things, though, like she isn’t rolling over anymore, and she stopped trying to crawl, and doesn’t reach for things.  She prefers her right side, and can’t hold things or move her left hand or leg. Her left arm hangs usually, though it does move sometimes, but her hand stays clenched up and when they do her hamstring stretches, her left foot curls in sideways.  Even with oxygen, her heart is working too hard.

They think she is just having too work too hard to breathe, and that it is using too much energy.  They are talking now about a trach (which will require suctioning every 20 minutes 25/7) and also a g tube (in her belly instead of her nose), so she can keep trying to eat but also get more calories – she is almost six months old and not yet three pounds more than her birthweight. 

Plus they say they can’t tell for sure what is cerebral palsy happening, with her red face and pale color and lacey skin and dusky hands, and what is just not having enough energy (oxygen and calories) to move and play and try, even though she wants to do so many things.

She has a new pulmologist, a new cardiologist, and I hope they will help.  The others are telling us to be prepared for hospice.

I am not ready to give up on this baby.

Obviously the medical issues are significant, and awful, and hard, but there is help for those things.

If they will help those things, other things will fall into place.

There is hope. There has to be.

She is still brilliant.

She is still gorgeous.

She is still fighting so hard to live.

So we wait, wait and pray, wait and pray and hope for help, one breath at a time.

   
   

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

High Chair — 1 Comment

  1. Oh, Emily, my emotions can’t decide which is harder, watching her struggle for breath, or you having to hear they have no hope. My prayers and thoughts are with you both. It’s so hard to say God’s will be done in these impossibly hard situations.