Friends and family, we remain eternally grateful for your nearness during what has now been almost 18 months of unthinkable difficulty. KJ’s health remains complex and honestly, difficult to break down and explain. Thank you for being gracious and patient and giving us the space to share when our capacity allows.

One of KJ’s confirmed diagnoses is something called Dysautonomia. You can read more about that here: Dysautonomia International

This has been exacerbated by Small Fiber Nueropathy, which was confirmed via biopsy. The autonomic nervous system is largely made up of small nerve fibers, damage to or dysfunction of these fibers is a direct cause of autonomic failure and multi system impact, an impact that has been devastating. KJ’s days (and in turn, our days) are incredibly difficult and her symptoms are severe and debilitating. On any given day she deals with severe headaches, low blood pressure, pain, numbness, blood pooling in her legs and feet, dizziness, and refractory nausea and vomiting. All of this alongside adrenal insufficiency, which means KJ’s body is not making cortisol, a steroid hormone produced by your adrenal glands that regulates your body's response to stress, metabolism, blood pressure, and sleep-wake cycles. The greatest impact remains to her gastrointestinal system as her stomach is not moving or emptying correctly. Because of this KJ has not been able to successfully keep food down for about 14 months now. This has been the number one reason she remains so vulnerable. To tolerate nutrition or medication we have to bypass KJ’s stomach. She remains on TPN, a method of delivering complete nutrition directly into a person's bloodstream, completely bypassing the digestive system. We are also slowly attempting to trial small amounts of volume into a J-tube that was recently surgically placed to access her small intestine. 

Although we now have confirmation of Dysautonomia and Small Fiber Neuropathy, these things are secondary to an underlying condition that is damaging the small nerve fibers. To correctly treat the underlying root cause has to be identified. Both KJ’s medical and integrative teams have working diagnoses but we remain months out from clarity with that specific diagnostic process. We are deeply grateful for the progress that her Orlando Health team has made alongside of their diligent work to keep her stable. However, after hours of research Chad and I believe KJ needs an intricate, integrative and multidisciplinary approach to healing that combines autonomic neuro rehab with closely controlled medical treatment. This is incredibly difficult because it does not exist in Florida and exists only in outpatient settings. Because KJ is vulnerable and currently requires a central line (a catheter inserted into a large vein in her chest that is guided into a major vessel near the heart) to survive and deliver nutrients and medications to her body, logistics to travel out of state are incredibly challenging. 

Friends, it is incredibly humbling and vulnerable to be unable to simply put your sick child on a plane and take her where she needs to go. The hurdles to treatment with safety, insurance logistics, physical challenges, out of pocket expenses and practical day to day needs, are very real. 

First and foremost, for moments of reprieve from debilitating symptoms for our precious girl and for renewed hope as she navigates the painful loss of an extended season of her childhood. With so many special things that happen in the spring and summer, this time of year is especially hard.

Secondly, we are asking God to make a Red Sea Road. In Exodus Moses leads the enslaved Israelites out of Egypt, only to be trapped at the edge of the Red Sea by Pharaoh's army. BUT GOD miraculously parts the sea, allowing the Israelites to cross safely to the other side. 

In one of my favorite songs, the lyrics read:
How, can we trust when You say You will deliver us from all of this pain, that threatens to take over us? This desert's dry. But the ocean may consume and we’re scared, to follow You. So we’ll sing to our souls, we won’t bury our hope, where He leads us to go, there’s Red Sea road.

Left to ourselves when we step back and try to imagine the road to seeing our girl well and whole it truly feels like the ocean is ready to devour us. But God in His kindness continues to give us just enough faith to believe: when we can’t see the way, He will part the waves. 

Thank you for standing on the edge of the shore with us. 

May God move in such a way that the only explanation is His mighty power and extravagant love. 

Holding on, 

Chad, Amber, James and KJ