Burns Family

If you know Courtney and Nick, you know what kind, loving, wonderful people they are. They would do anything to help anyone. This is our chance to help them! After meeting with doctors at Children's Mercy, they referred the family to specialists at Harvard in Boston for an issue with Jaxon's facial nerves. Taking last-minute trips to Boston will be very costly, but Jaxon needs the best doctor's helping him. I know above all, the family would appreciate prayers for everyone involved.

Update 7/21

They already called us with an opening for surgery!! J will have surgery August 15th. God is so good and answers prayer-keep sending them our way for healing for our little guy, the medical staff, and us to stay strong as we continue this journey with Jaxon/

We really can't say enough great things about the overabundance of support we feel from all our loved ones. We are truly blessed with the best.

Jeremiah 29:11 has always been my favorite verse and is even more so through all of this. "For I know the plans I have for you, " declares the Lord, "plans to prosper you and not harm you, plans to give you hope and a future."

Update 7/20

Jaxon will have to have surgery to try to save his face muscles ASAP (in the next 8 weeks or less). If we wait too long, there is a chance he will never be able to recover the strength on the right side of his face. Right now, there are no openings, so we are basically on call for the first procedure. (There will for sure be 2 surgeries, possibly 3). Basically, the tumor has created enough damage that we need to try and get his eye and mouth working while we still have the chance.

At the time of his first surgery, they would take a more detailed MRI to focus in on if he is at risk of going deaf or checking for any other concerning areas that the tumor could impact. They would then create a plan for the tumor. So we really don't have any answers on the tumor at this point. They are weighing the risks as that surgery is extremely invasive and difficult. The removal of the tumor is worst case scenario. So potentially a couple surgeries.

She said the surgery would involve incisions in both feet to remove nerves from the ankles to take nerves to put in his face. The long term effect of this is the top of his feet will remain numb. They basically need to quickly get the axons from the strong side of his face to the weak side of his face for the chance to save his smile and allow him to properly blink. He would need botox on the weak side of his lip, but she thinks she can somewhat save his smile. Just said we are in a total race against time.

They would also be removing a chewing nerve from the good side to allow connections from the smile and blinking nerves to have a place to connect.

The doctor said the recovery for the first two surgeries is very smooth and quick.

We thank all of you for your continued prayers as we patiently wait for an appointment and answers on the tumor. We feel so good knowing we have a plan in place. God has had this planned long before we ever even dreamed of Jax. We feel confident in the decisions we made today and know we were sent to the right doctors.