Monday, February 23, 2015

Update on Eosinophilic Esophogitis

This is the way Abigail looked last night when she was sleeping.

Abigail Sleeping

But before she went to sleep she told me, "mama, I have that EE feeling. It feels like there's something burning coming up half way."

I told her I'd lay with her extra long.

Often at night Abigail tells me she thinks she's going to throw up. And she looks like she is. You know, as a mom how your child looks right at that moment. Often she doesn't. But she feels sick.

At her last endoscopy her eosinophil levels here considered "extreme".

When we hear results like that we are devastated for her. Knowing that eosinophil levels that are high are painful. Painful to swallow, causing reflux, doing damage to her esophogus.

Her gastroenterologist has us up her meds but that is really all we can do to manage this chronic disease.

This week her heath needs are forefront in my mind as I make calls, leave messages, make sure my cell volume is high enough to hear a call from her doctor.  I'm waiting to her the next step.  Another change in meds?  When is the next endoscopy?  Can you do a write up on that last endo and blood work for her school nurse?

And then I walk in and she looks like that.  Worry and to dos wash away with the peace on her face.

This weekend we watched "Chimpanzees" by Disney.  We love the Disney nature movies.  In this one a baby chimps mama died and by the end of the movie the older chimp male leader who never even looks at babies 'adopted' the orphan chimp.  It was such beautiful camera work and editing.  Watching the baby chimp fall asleep in the old male chimps arms Abigail said, "God always has a plan."  She was munching pizza and said it as if it was the most normal thing in the world to say.  But Scott and I looked at each other knowing that the gift of her deep faith will serve her well in life.

She's something that Abigail.  And I am so blessed, so very blessed to be her mama.


5 comments:

  1. And she is blessed...blessed to have you as her mommy.
    God chose you, Tara...
    He knew that she needed you to be her mommy.
    Hugs and love. ; )

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  2. Oh she is beautiful Tara just beautiful. Yes God always has a plan....such a smart little lady.
    Praying for you sweet friend❤️

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  3. Sweet, sweet girl. The faith of a child is like nothing else! Prayers for all of you!

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  4. Bless her heart, precious little girl. I truly hope she feels better soon and the dr's can get the pain managed. I will keep her in prayer. My niece is suffering from terrible reflux and they are in the process of tests. She doesn't want to eat at all because of pain and has lost a ton of weight. I sent the name of this condition to my sister to see if perhaps it could help them figure out all angles.
    Big hugs to you... it's so hard to see our children in pain.

    Blessings,
    Jill

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  5. oh sweet, sweet abigail!
    can you come over to play later...the girls are dying to see you!!:)

    ReplyDelete

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