The Road to Avonlea’s Recovery

From before she was even born, there have been so many unknowns for our little Avonlea Rose. The only thing that has remained certain is that she is our little miracle, and we have never been more sure of that than during this last couple of weeks. On May 31st, Avonlea had surgery to revise her cleft palate. Surgery went well, but her body reacted with extremely high levels of inflammation. Her tongue and mouth swelled so much that on June 1st her airway became blocked, and she went into cardiac arrest for 25 minutes while the amazing doctors and medical team here at CHOP worked tirelessly to resuscitate her. While they were eventually successful and brought our sweet little girl back to us, she sustained significant injury to her brain, the extent of which remains unclear. What we know for sure is that this girl has been a fighter since the day she was born - and she’s shown us every day here that she’s not done fighting. However, over the last few weeks, we have also been searching nonstop for some way that WE can fight for HER , which is why we are posting this. When Avonlea was born, we made the decision to bank her cord blood. We have been in contact with Dr. Joanne Kurtzberg at Duke University who uses cord blood to treat various brain injuries. We do not know that this will work for Avonlea, but we do know that no matter what, we want to try. We do not yet know if this means we will be transporting her to Duke once she is safe to travel or if it will be performed here at CHOP. Everyone, including Dr. Kurtzberg and her team here, agrees it would be best not to move her, but the cost could be considerably more than at Duke, since they already have approval from the FDA. Either way, the cost will be quite significant, especially since neither of us are currently able to work so we can be here for our Avonlea. We also currently have no estimate for how long we will be away from home. Regardless of the cord blood therapy, Avonlea is facing weeks to months of intense inpatient physical therapy once she is medically stable and able to be extubated from the ventilator. The road in front of her is going to be extremely difficult no matter what, but if there is one thing in this world we believe in, it is that Avonlea is the strongest person we’ve ever known. Over the course of the last 12 months, we have kept much of her medical journey private because she is so much more than her diagnoses, all the while wanting nothing more than to share her story with the world because the pride we feel for this little girl is unlike anything we’ve ever experienced. But it HAS been a journey - the hardest one of our lives, in fact. But it has also been the most rewarding. Watching her grow and learn and experience the world around her has been a truly amazing gift, and we are so incredibly blessed to be her parents. We never really knew before this what the future looked like for her. But one thing was certain - that through everything, she has remained the happiest, feistiest, sweetest, most lovable little goofball - and we will do everything and anything in our power to get that back - which leads us here. Any donation, no matter how small, or even a simple share of her story, will be appreciated more than we could possibly express because the greatest gift we could ever receive is the chance to see her smile or to hear her laughter again.