Going HOME!

Sorry I didn't update sooner! When you've got a grumpy, recovering 2 year old who wants the iPad, blogging is not really an option!Evie's nose looked PERFECT! It was beautifully open and had no scar tissue growth. We are so incredibly relieved. We're definitely not out of the woods yet, though, and they want to see …

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The Journey to Trach Free Has Started (and I’m Not Ready)!

We’re still here at my parents’ house resting and waiting, but leave tomorrow for Cincinnati again. It’s been so nice to see our other daughter and relax a bit. I wish we were home, though. When we left for Cincinnati, we thought this would just be a “discovery” trip. They’d do some tests, figure out …

Quick Update

Sorry I haven't updated you all! Evie's surgery went very very well. They ended up just keeping her overnight! They did decide they want to scope her nose next Wednesday to check for scar tissue growth, though, so our trip just got longer. I have to check with a few doctors, but I think we're …

Extra Info and Tomorrow

There were a few things I forgot to mention with the information overload of Wednesday. First, Dr. Cotton wants to be more aggressive in figuring out Evie's ears. The constant drainage is just unacceptable to him and we're hoping we'll find a solution. We had always been told it was just a CHARGE issue and …

The Scoop

First of all, thank you all for your prayers. Evie did great with the procedures and anesthesia and is just a bit grumpy from it all. GI and pulmonologist both had good news. GI didn't find any of the problems he suspected except one: she has a tiny stomach that doesn't have the ability to …

Day Two Complete. Day Three Prayer Requests.

Evie, Evie, Evie. Why? Why do you insist on throwing curve balls??? First the non-curve balls. CT scan this morning went smoothly. Child Life put on an episode of Yo Gabba Gabba while they started anesthesia and she barely even noticed people were around her! All went fine during the test and we got to …

Day One Complete. Day Two Plans.

It was a long day, but overall, I think a good one. Her cardiology appointment went well and the doctor didn't make me feel like I was a completely crazy person for wanting another opinion.  She noted the issues in the Evie's EKG (lag in communication between the two sides of her heart and an …

Day One

Well, we are here and have a busy day ahead of us. Evie sees cardiology at 7:30 this morning. Please pray that we will either feel comfortable with Evie's heart just being a bit weird, but fine or we'll find whatever it is that is causing some of her issues. And if there is a …

Cincinnati Schedule

I just got our schedule for Cincinnati and wanted to share it so you all know how to be praying.  These times are in Eastern time zone. 4/8 Monday: 7:30am Cardiology (we just want a fresh set of eyes on Evie's heart) 11am Videoswallow (this is a live xray that shows us how Evie swallows) …

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