Yesterday Pearl finished up an EEG and had an MRI, and the results have been encouraging. The MRI confirmed what the 20 week ultrasound indicated about Pearl’s brain development—which is, as Eric puts it, “only bad news, not worse news.” The tests revealed that Pearl can indeed breathe unassisted, which is great news. Pearl’s MRI will be sent to the Carter Center, a leading researcher for HPE and will hopefully help inform medical practices for HPE diagnoses in years to come.
Pearl will likely always have small seizures but they have a care plan that should minimize their frequency and severity and have adjusted her medications such that she will be less groggy and lethargic. God is working in the hearts of the team at Vandy, who are now on board for medical support.
If you’ve wondered, the seemingly giant pacifier has been helping keep Pearl’s tongue from obstructing her breathing. They removed it earlier today and are watching her reaction over night. If she appears to be breathing well without it, she’ll be headed home tomorrow. Given the 24 hour schedule Ruth and Eric have maintained between Pearl at the hospital and Brennan and Abigail at home, they are exhausted. While home offers the comfort of a bed for sleep, it also presents juggling challenges and additional caregiving responsibilities. Please pray for them to experience deep and meaningful rest.
As always, pray for Pearl’s continued strength and healing and for God to grant Brennan and Abbey patience and understanding beyond their years even as they fully enjoy being kids. And one last request from Eric, “The baby across the hall is in bad shape. He’s not been stable and his family isn’t from Nashville. They could use prayer too.”
God has granted so many of our prayer requests thus far. Praise him for all the big and small miracles and changed lives that are already a part of Pearl’s story.
Thank you for your ongoing care and support.