Evelyn Update

 

Big fat thanks to every single person who has been praying for our girl.  So many of you have asked for an update, and we appreciate that so much.  The truth is, we've waffled on how much to protect her story.  Waffled on over-sharing our kids' lives. Waffled again about blogging. In the end, she needs her prayer army to keep fighting for her.  We also want to honor those who have followed her, sponsored her and prayed. 

 

We are currently still in the evaluation stage.  Hours have been spent researching, talking to other parents, searching for medical supplies and pouring through medical records.  Some serious trial and error nursing is taking place as we text her forming team of doctors and Google DIY videos.  She had lots of tests while in the hospital, and has had two more radiology exams since.  She's on another antibiotic to prevent traditional viruses, but if she gets a fever, we head back to the hospital. 

 

She has a surgery scheduled for January 22nd, and will have more in the future.  Next week, there is an appointment with a colorectal surgeon who will likely suggest further procedures.  We also await an appointment with a neuro specialist.  Other specialists, the ENT, dentist and traditional immunization updates are pushed on back. 

 

She's complicated and needs advocates.  Before getting in to see our regular pediatrician a few weeks ago, we had to go see another pediatrician to get a test done immediately.  After our long appointment, when that doctor realized that we were not asking her to be our primary care doctor, she sighed in relief.  Her response, "Oh good, because I don't need any complicated cases right now."  As you might expect, our momma and poppa bear sides came out in full force in that moment.  My eyes filled with tears as I slammed our things into our bag,  first cried to two friends, then complained to every.single.person at her practice. 

 

Our prayer request at this point is for the best medical team.  We've talked to some nice doctors, but we need experts who will advocate.  We've got one, now we need a few others. 

 

This little soul is a strong one.   She's endured much and fought a hard fight with the life-saving help of Love Without Boundaries.  Now home, she has family standing beside her. 

 

 

 

 A couple weeks ago, after being connected with her former surgeons and medical staff from Hong Kong, I found this photo on one of their FB pages from one of her hospital stays.  They cared for her well during her time there, but I am undone by this image.  Little ones should always have parents beside them.   

 

Today we celebrate God inviting us to walk into her story.  Her family with her, she is moving each day toward more smiles and giggles, better health and a lots and lots of two year old fun.  She's got some more battles to fight, but we'll walk ahead in full faith, all changing together.   

 

Evelyn's verse: 

 I have set the Lord always before me; because he is at my right hand, I shall not be shaken.

Psalm 16:8