Baby Evie

A month ago today we were so excited to have Baby Evie finally coming home from a week at CHOP.  Things improved a little as far as her constant crying.  But it was still painfully obvious that she was/is not comfortable while awake.  New meds and trying new feeding schedules still did not provide a working routine that provided comfort.  After a neurology appointment last week and a rough weekend the neurologist sent them back to CHOP on Monday.  This time around the doctors and nurses are saying she won’t be sent home until they can find some concrete answers and sure ways to provide comfort for Evie.  (Just for clarity her name is pronounced E-va or E V.)

Again it’s amazing to be a part of a great, caring staff of nurses and doctors.  Lots of tests that seem to come back with ‘normal’ results.  A serious case of acid reflux is still their main concern.  It’s trying to understand why or how to ‘fix it’ that has discussions continuing.

This week Mike and Maegan started a Care Page that they hope will help answer questions for those interested. 

You will need to sign up as a member to access the page.  Her name is listed as Eva Smucker and the title of their blog page is Evabythesea.

Thank you to those of you who are faithfully and steadfastly praying for them/us.  There are some specific prayer requests listed on the page.  It is, without a doubt, the prayers of God’s people that have and continue to carry them through this journey.