I’m sorry it’s been so long since we’ve shared an update. We know you have continued to ask and pray and we are so humbled that you would remain so invested. I can’t tell you how many times I’ve tried to sit down and get some words out and it just felt impossible. 

The truth is, it has been an incredibly difficult few months rounding out an already difficult year. 

KJ was hospitalized again in November for 39 days. We got home right before Christmas. We would be grateful for your grace as we have decided to share minimally regarding the specifics of her continued health journey and diagnoses. Things continue to be ever changing as we get more data and get connected with more specialists. To honor KJ but also minimize confusion we have decided to keep details to a minimum until we feel confident that we have a clearer picture. 

It’s been a year of diagnostic whiplash - for all of us. 

What we do know is that KJ is really sick. She has a chronic illness with multiple comorbities, many of which have been exasperated by incorrect, incomplete or misleading diagnoses. Although we’ve never been more convinced that medicine - is in fact a practice - we also remain grateful to live in a country where we can freely seek out the best care for our girl. 

KJ currently has a PICC line that allows her to receive TPN, this is how she currently receives all of her fluids and nutrition since her stomach is not moving as it should. We are thankful for this form of stabilization but have to be very careful while she has this type of central line. In addition to the TPN helping to better stabilize during her last admission it was confirmed KJ does in fact have secondary adrenal insufficiency. Although we weren’t happy to confirm this, knowing this and treating this is essential to KJ’s healing and greatly influences treatment and care moving forward. 

Since October KJ has received two IVIG infusions. She will need several more however she has had complications with both infusions. We are working to better understand why this happened before moving forward and to make the necessary adjustments to avoid these complications again. Her picture remains complex and if you or anyone you know navigates chronic illness you understand these challenges. Medicine is not a perfect science. Everyone is different and what works for one may not work for another - however, our hope is not found in the latest NIH article, although helpful, our hope remains in the One who made KJ and knows her best. 

Somewhere along the way I think most of us subconsciously put a timer on seasons of suffering, the longer they last, the more we and those around us begin to really struggle to understand. We feel this deeply but we also humbly acknowledge the promise was never, “for healing, for answers, or for reprieve.” The promise was and has always been, “His presence.” We believe for and continue to trust God for those good things but we find rest in knowing: when darkness shifts from season to climate, His nearness is our peace.

Before I share a few specific ways you can pray for us, we want to say thank you. 

Thank you to so many of you who have given and prayed. We know we cannot begin to fathom all of those who have given and interceded on behalf of our girl but we pray our gratitude reaches you. 

Thank you to our families who have loved us in a way only they can. To our incredible parents and siblings - you are an extension of God’s mercy to us. To our friends, from checking in, to praying, to leaving soup and smoothies by the front door - we hope we are able to love you back as well as you are loving us. 

Thank you to our NCBC family for feeding us, meeting our needs, praying for us, loving our boy when we can’t be there and for reminding us we are thought of and missed. 

Thank you to the Rock Church and the Rock School for your creative and extravagant generosity, blessing our family over and over again with your resources, intercession and love. 

Thank you, Dr. Matthew Antonucci for keeping your promise. Your commitment to see KJ well has single handily held us up time and time again. 

To the countless physicians and specialists and to KJ’s primary team at Healthy Steps who have remained so engaged, we owe you our deepest gratitude. For those of you who have paused, listened and acted, thank you from the bottom of our hearts.

Lastly, to the nurses, across multiple healthcare systems who we’ve spent 96 days with this year. You are the heroes of healthcare. You have been our community, you’ve been our advocates, you’ve been KJ’s safe space. You know who you are - we adore you and we acknowledge your excellence. You all deserve raises ten fold. 

KJ’s journey is far from over but the Lord continues to remind us that gratitude tethers us to perspective and it was important to us to pause and say thank you as a part of this update. 

Our deepest areas of need at this time are for your prayers. 

Please pray for KJ to experience reprieve from constant pain. 

Pray for safety and ease as it has been determined it is best for all of KJ’s care to be moved down south. This is taxing on her and on our family. 

Pray for clarity and ease with future IVIG treatments.

Please pray for doors to continue to open with different specialist, in Fl and in other parts of the country - and the right ones just for KJ. 

Pray for Amber as she is KJ’s primary caregiver, researcher and advocate. Pray for supernatural rest and wisdom for she and Chad - who continues to be the best, most hands on father to KJ. Pray for growth and favor as he enters a new year of business and balances work and travel for KJ’s care. 

Pray for James. This year has not left any of us unscathed yet we’ve marveled at James’ growth and maturity. He remains so unselfish, supporting his sister at every turn while working hard to meet his goals and prepare for his senior year in the fall. He is KJ’s best friend, her person and he is a constant gift to all of us as we navigate such difficulty. 

Lastly, would you pray for KJ’s physical and emotional strength? Pray for her ability to eat, walk and even dance again. She remains sweet, witty, wise and trusting - enduring far more than feels fair yet treating those around her with kindness despite her pain and loss. 

We ask you to join us in believing for total healing yet continuing to turn the posture of our hearts towards trusting the Lord and believing He has good plans - even the complicated ones. 

Thank you for giving, praying and reaching out even when we can’t reach back. We will never forget the way so many have loved our girl. 

“Not by power or by might, but by the power of the Spirit…” Zec. 4:6

Chad, Amber James and Katie Joy