Summertime is in full swing at the Johns’ house. Swim lessons, therapy appointments, and family visits dot the calendar and the days are passing quickly. We have the dates for Campbell’s next two surgeries, August 14th for her cranial vault remodel and October 3rd for her first finger and toe release. Both surgeries will be at CHLA.
The August 14th surgery will be a cranial vault remodel with an orbital rim advancement. During this surgery, the surgeons will be reshaping Campbell’s skull as well as building out her forehead. While it looks like Campbell has a large forehead, her brow bone (aka supraorbital ridge), is actually pushed back into her cranium. I can reach up and feel the bone underneath my eyebrows, but Campbell’s bone appears missing, buried deep in her skull. Dr. Urata and his team will build out an eyebrow ridge and give her a forehead while reshaping her head and giving her brain room to grow.
We’ve been told by other parents this surgery is bittersweet. Campbell’s appearance will change and the sweet face we love will look quite different. Overall, this is a good thing, as this surgery is an important step in the process to a more normal appearance. After this surgery, Campbell’s next cranial surgery hopefully won’t be until she’s around eight when she’ll undergo a facial bi-partition and mid-face advancement. Even though I’m excited about her progress, I’m also sad and have spent significant time studying her features, memorizing what she looks like.
This surgery is a scary one for us as parents. Dr. Urata, Dr. McComb and their teams are quite adept but there are still risks for Campbell. The surgeons will be cutting and reassembling her skull-cap, reshaping her brain, and building her a new forehead. (You know, fairly straightforward, common procedures for experienced surgeons. But very uncommon for parents like us.) Campbell is at risk for blood loss and she will revisit the PICU for recovery.
As the anxiety rises, we have the opportunity once again to trust the hand of the One who has brought our girl safe this far. He has been faithful in the past, and He will be again. Our job as parents is to lean into God’s wisdom, peace, and guidance and care for our girl the best we can using the gifts He’s given us.
We kindly ask for prayers for Campbell’s surgery on August 14th. Please pray for Campbell, for her health and well-being as well as for her medical team, the hospital staff, therapists, and all those who she will meet as a result of this surgery. Thank you for your support and your prayers!
Campbell Taylor's Journey 