Hello everyone. I am Heather's mom, Dawn, and Miss Everly's Mamaw. Everly has been a bit of a firecracker since birth and they believe she was born with Pierre Robin sequence, so genetics will be getting involved with her case.

Mom and dad (Heather & Zack) met with the plastic surgeon last week and he went more in depth on the surgery process and it’s much more intensive than we expected. (Pictures of surgery plan in the comments attached)

Surgery will be December 8th. The plan is to cut/break her jaw and use titanium brackets that were 3D printed from her CT scans; they should mold perfectly to her jaw. They will have pins on the end of the brackets that come out behind her ears that will have to be turned multiple times a day to slowly elongate her jaw.

The goal is once her jaw is in a more proper position, it should allow her a proper airway to hopefully not need oxygen anymore, so we will repeat a sleep study in March. Hopefully, she will learn how to properly eat once her jaw is aligned as well, but it is very likely we will leave the hospital with a G-tube.

After 3 to 5 months, the titanium brackets will get removed with another surgery. She will likely need another surgery on her jaw in her teenage years. So, overall, for sure 2 surgeries but the potential for 4.

Now the most overwhelming part - after surgery Everly will be intubated and in the ICU for a week, and hospitalized for roughly 3 weeks. The surgeon said there is a high potential to cut a nerve that will paralyze the muscle in her face that allows her to frown. And he said infection on the pin sites (behind her ears) is pretty much inevitable but treated quickly with antibiotics should avoid any need for additional surgeries for infection washouts.

Unfortunately, hospitalization is about 3 weeks and our work can only pay us 60% of our pay for 2 weeks for Caregiver leave. We have no idea how much support she will require after discharge, thus the reason for the Go Fund me.

The past week she has been pretty miserable and difficult to keep calm, so sleep has been very minimal. By the time we finish the tube feeding process (which can take up to an hour) and get her calm, it’s time to start another feeding. We will most likely be in the hospital still during Christmas and are trying to take everything one day at a time, even when it feels impossibly heavy. We’re exhausted, overwhelmed, and terrified… but we’re also so proud of our little resilient fighter.

We appreciate everyone’s love and prayers, and everyone who continues to check on us.