@kylies_journey1: After church I went to the hospital and received not the best news. We know with Kylie’s disease that the life expectancy is only 3-6 months old, so we knew eventually she would start to decline. So far this weekend her X-rays have slowly started to look worse. She is now requiring higher settings on her ventilator. For the most part she has been stable for so long on her ventilator that I was hopeful this wouldn’t happen. I’m fearful because Kylie is not even listed yet on the transplant list. I believe in the power of prayer and I’m asking for prayers that Kylie doesn’t decline anymore before she gets her new lungs and that she will be listed quickly. I debated whether or not to post this update because I don’t enjoy the bad updates but I want to be transparent with this journey. In Jesus Name the next update will be a good one!! Also, thank you to my friend Lisa for this prayer cloth from first church #babytok #babytiktok #usa#uk#canada
