Brave Warrior

Saturday, May 15th

Avery continues to be as resilient as she is strong. We didn't expect her to make it through last weekend, but she has gifted us with another week.

Her seizures are getting closer together. She had two Sunday morning and then another Thursday morning. They are getting stronger and taking a little more out of her each time she has one. We believe she was possibly still having sub-clinical seizures most of the day Thursday based on her increased heart rate.

Her blood pressure and heart rate have both been on the high side. She is asleep 99% of the time. She only complains of pain when we have to move her to change her. Her O2 sats will occasionally drop in the 20s and lower when she needs to cough, but they are mainly holding strong in the 80s and 90s. She is having longer spells of apnea, and you can tell by watching and listening that her breathing patterns are changing.

She is on the minimal amount of medication to keep her comfortable. She is getting oxy for pain every 4 hours, steroids 3 times a day, and Haldol every 3 hours. We stopped her maintenance fluids on Wednesday, and she has not had any nutrition since May 3rd. It is a very different experience and mindset to help carry someone to the end of life when you have fought tooth and nail for the previous 20+ months to cure them.

Only God and perhaps Avery know when her time will come. But for now, we are grateful for every moment we have with her. She is reminded all day long how much she is loved and cherished.

Please continue to pray for:

- Avery's comfort and symptom management

- Peace and understanding