We had a wonderful long weekend in New Orleans. It was surreal almost, after not traveling much for the first few years while Evie was sick. To be able to fly with no oxygen and travel without monitors was wildly normal (: We stayed pretty close to the hotel with our limited knowledge of New Orleans, but as long as the girls got to ride the trolley at least once a day they were satisfied.
The conference was amazing and really fun to be a part of. It was fun to walk the exhibition hall and see all of the latest pediatric innovations. One of my favorites was my free sample of "lice shield", you can never be too careful!! (: I had "faculty" on my name tag since I was speaking, so when I had offers to take samples back to my "patients" I got to explain that I was actually there as a mother and share a little bit of Evie everywhere I went. It's hard not to have a heart full of gratitude with such a glimmer of sunshine to share wherever I go!
Monday afternoon was my presentation. First in the program was a panel of medical geniuses; pediatricians with jobs in pharmaceuticals and research... a tough act to follow!! I was second, and shared Evie's story with a PowerPoint full of photos starting with her first hospitalization and ending with her walking on her 3rd birthday. Evie's geneticist followed with the medical/physician view of Evie's story. When we finished presenting, John, Lyla, and Evie came up with Dr. Lutz and I and we had a short Question and Answer. It was fun to hold the girls and answer questions from doctors who work on clinical trials, and had really good questions for parents. It was validating to both us and them as Evie is a beautiful example of the combined efforts of research, parental love, and God's provision.
What a journey we have been on. It is very emotional to retell Evie's first few years. When her disease was still life-threatening, every day had a tinge of fear. On the same note, I miss the days when I was on Heaven's doorstep every hour (sometimes more) asking for help. Begging for wisdom and discernment as we went through the whirlwind beginning of Evie's treatment. These past few years I have spent more time with my precious Savior than probably the previous 25 years combined. It is a joy and an honor to have a God who listens, responds, and loves me dearly.
Here are some pics from our trip:
Evie getting her face painted (:
Lyla holding a baby gator!
Evie wasn't really into holding gators...
kisses on the trolley after our presentation
the star of the show (: