Update

Sorry it has taken so long for me to update.  I really had to get it all sorted out in my head first.  So first, Grace is doing so much better.  She is feeling better and eating more, and not throwing up nearly as much.  She is only eating Elecare and brown rice.  The sweet potatoes didn't hold well in her tummy.

So here is the diagnosis of Friday:
Doctor #1: (at Children's National) Wanted to start from the beginning, insisted that it is multiple food allergies.  He gave us his email to have weekly updates on Grace.  Asked us to increase her Zantac since she is heavier and only give her Elecare.  We are giving her rice too because It makes her body produce too much bile (the Elecare does).    He reassured me that she is thriving because she is so heavy, and actually told me that she is TOO heavy.
Doctor #2:  (the allergist)  Said that he has reviewed her chart and strongly feels like she has Eosiniphillic Gastroenteritis. He said that if she were his child he would do the biopsy, but he was also under the impression that she would only be sedated (that no anesthesia would be used).
Doctor #3: (her new PCM) Said I am on the right track.  Gave us a referral to a nutritionist, but since she is not eating anything doesn't really do us any good right now!

So here is where we are at...
We need to decide if the "bandaid" (elecare and elimination diet) is sufficient for now, and delay the scope and biopsy... or do the biopsy now.... there are risks to both.... but Tony and I are leaning towards waiting.  My main concern is her being allergic to the anesthesia.  She gets ill with vaccines so I would be afraid the anesthesia would make her throw up... which is something I need to discuss with the doctor.

I have been realizing how worried I have been.  Worrying is a sin.  I have really been able to allow Jesus to work in me.  Show me His love and know that He is in control.  I am appreciative that she is alive, and this is a non-life threatening illness (although it could be if it gets out of control, we have it under control now).  Grace is different... and I need to accept that there is no "easy fix".    I will probably struggle with this over and over... but isn't that like all sins?  Just when we think we have it under control we slip up again.

1 John 4:18 "There is no fear in love.  But perfect love drives out fear, because fear has to do with punishment.  The one who fears is not made perfect in love"

I need to accept God's love for what it is: perfect.  Allow him to drive out my fear and worry.  God is not punishing me... "His love will quiet your fears and give you confidence" (NIV study Bible notes)