The past week has been hard. We had been planning a trip to UTMB for Molly’s surgery in hopes of relieving some of her tone issues and to give her more comfort. As last week progressed, Molly started hurting more, having more seizures, and her tone increased. We have been adjusting, changing and adding medications, but have been unable to make her better. We have a team of wonderful doctors, but Molly continues to show us who is the boss, and it is not us. By Sunday night it was obvious how bad her tone had become. She is no longer able to tolerate anything in her g-button without it leaking out. This morning, we decided, along with our doctors, that it was time to start hospice care for our beautiful angel. We know that, with their help, we will be able to get her pain under control.
We are so thankful for all the wonderful doctors that have spent hours with us, and for all the therapist that have made this past year bearable, all whom have become close friends. We have met so many amazing special need families that live a life that no one on the outside can ever imagine. We have been shown so much kindness from friends and family. I know that we could not have survived without all the support and encouragement. I thank God for all these things.
We will update everyone when things change and about arrangements, once it is time. Please continue to pray for Molly to be out of pain, for Brighton during this time and for Kelly and I.