Hello friends. It is a beautiful, sunny day here in Kentucky. The windows are open, and the fresh breeze is cleansing, both for the air and for my heart. I meant to update sooner, but we have been in the throes of so many adjustments and projects trying to restore some semblance of normalcy to our family life. It's always a work in progress, but the rhythms are starting to come back. 

Last week was a busy one. We had multiple appointments, and tried to work in some things like returning to Bible class, going shopping, and other basic life things that Ansley hasn't been able to always fully participate in. She enjoyed a long-anticipated massage therapy appointment - a month in a hospital bed is not kind to the muscles in your back and neck! She had held her head so stiffly the entire time she had that NG tube, and her neck was really bothering her from that. What a relief to work out those knots! On Tuesday, we met with her surgeon and had some labs done as well to make sure all her numbers were continuing to return to normal levels. Praise God, she has been cleared from needing any more follow-ups there! Everything looked good. She sat through most of her Bible class on Wednesday night, and then we had PT on Thursday.

As some things have calmed, some other things have ramped back up, especially toward the end of the week. Unfortunately, I'm referring to the anxiety and FND (functional neurological disorder) symptoms that we had greatly hoped would disappear. They have not. Things are still better overall than they were before the appendix issue was resolved, but her nervous system is on high alert, and she is going to continue to need some help. 

On that note, we had her first appointment with the FND trained psychologist up at Cincinnati Children's today. We've been waiting for this appointment since she was first diagnosed, as everyone told us from the start that psychology offers the best tools for helping this part of her mind-body connection. This psychologist was recommended by another FND mom, and we were not disappointed! She was personable, knowledgeable, and straightforward. (Funny note - This was our first visit to the main Cincinnati Children's campus. We were awestruck. It wasn't until we were leaving that I was able to settle on what it reminded me of...an airport! It was like walking into a busy airport terminal, and even the signs and terms - "concourse", ABCD designations like gates, etc. - conveyed that idea.)

Back to the appointment -- One of the things that came up was the idea of returning to the CAMP program. It is her belief that Ansley still would benefit from in-person rehab. It is so much for parents to try to trouble shoot all of the crazy symptoms and disruptions that this condition presents, so that is back on the table for discussion. I'm rather numb about that, to be honest. We are giving ourselves the week to think about it and will discuss it again at her appointment next week. Pray for wisdom and to be able to look past the automatic emotions to discern what is best for her. I still can't begin to wrap my mind around another hospital stay. 

Meanwhile, her recommendations between now and next week are to highly focus on schedule. Sleep schedule, meal schedule, school schedule -- as much structure as we can create. If she is up until 2am again with functional seizures like she was Saturday night, then we still need to wake up and go about our day. Maybe that does not seem like the mountain to you that it does to me, but this hits me in my weakest area, especially after an upheaval like we've had. That being said, I *know* it will be helpful to zero in on this, not just for her, but for all of us as we slowly inch our way forward. 

Ansley is doing well. As much as I want this journey to be over for her, it is not. Maybe it never will be, but I have hope that we can get to a better place. Meanwhile, the words of this song bring me comfort. I first sang it at a dear woman's funeral. I took a magnet with the words home with me that she had made herself, and that magnet went with me to my youngest daughter's birth in 2019. It went with me to the ICU after her birth. It has since been part of many loved ones' funerals and difficult journeys, and I cry each time we sing it. The tears are natural, because the words are powerful and touch my heartstrings. I share them, in hopes that they will impart encouragement and strength to anyone reading this as well.