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LeBonheur Children's Hospital has been nothing short of amazing for our little Emmy!

On the morning of July 12 of this year, James and I were headed to the Post Office to take care of passport applications for him and Emery. It was past her normal nap time and she had fallen asleep in her car seat on the way there. While we were completing some of the paperwork and handing things over to the clerk, I noticed Emery had just woken up after Banks went over to give her a quick kiss. Then I looked a little more closely and saw her doing this strange stiffening motion and her eyes rolling back - it happened about 10 times in the course of a couple minutes. It scared me enough to make us immediately leave the Post Office and go straight towards LeBonheur Children’s Hospital, which was about a 45 minute drive away. She was immediately taken to triage and then taken back for suspected seizures. After a short EEG, doctors confirmed that Emery had a rare and very serious seizure disorder called Infantile Spasms. Our world was turned completely upside down that day. She spent the next week in the hospital, undergoing more tests and MRIs, and was started on an intense treatment of twice daily steroid injections and anti-seizure medication. These medications wrecked her little body and stole her personality from us for months…but thankfully they stopped her spasms almost immediately. She’s been seizure free since and is fully off all medications. They also helped put all the puzzle pieces together and discovered she has a genetic condition that explains sooooo much and has helped us understand her and her needs. 

Thanks to the incredible ER, neurology, ophthalmology, nephrology, cardiology, gastroenterology, genetics, and LEADS (therapists!) teams, our Emmy is THRIVING!!!