Apologies for the long overdue update! Life this past month has been a wild ride as I know it’s the same for all of you. I hope this finds each one of you healthy and safe during this trying time.
The biopsy results from the endoscopy on March 17th gave us both great news and not so good news. Leo’s esophagus is clear! Meaning the medication is still working and controlling the Eosinophilic Esophagitis. What a relief for us! The bad news is the biopsies of his intestines confirmed what the doctors already thought...he has celiac disease as well. So now on top of the EoE and food allergies- dairy, soy, tree nuts, beef, egg, coconut, sunflower, sesame, avocado, chickpea and cod- he is also allergic to gluten. This mountain of ours just got a little tougher to climb but boy are we grateful to our incredible team at CHOP for getting to the bottom of what’s been making our sweet bean suffer.
Readmission to the day hospital is cancelled at this point due to the quarantine but we now have video appointments with Leo’s team which has been a great help. Although there have been some bumps in the road, he has progressively done better and better with eating since we’ve been home. He’s back up to the recommended volume each meal and most times he willingly takes all his bites!! We are cautiously optimistic that we won’t have to go back to CHOP for anything more than follow ups at this point!
Words can’t begin to describe how grateful we are for our family and friends who sacrificed so much to help us and Leo get through this difficult journey. In the many moments it felt like this was too much to bear, you lifted us up and carried us through. Over and over again. To those that made the long drive down...many times or even one time, to those who prayed for us, to those who made us meals, to those who donated to the GoFundMe, to those that took care of Rocco and our house, to those that sent such thoughtful care packages, to our jobs and bosses who were so flexible with our schedules, a massive thank you from the bottom of our hearts. We have experienced love in ways we’ll never forget and are endlessly grateful to each one of you. We are immensely blessed to have a village of such extraordinary souls in our corner.
With much love and gratitude,
Aaron, Katie and Leo
