Home Sweet Home!
FYI- I started to write this post quite awhile ago and just haven’t had the time or energy to complete it so finally I am making the time. Let’s start off with a happy Faith pic! So beautiful!
After nearly three months in the hospital, Faith is back home! She has been home for over a month now and so far we have been able to manage her care at home and plan to do our best to keep it that way. There were moments during this past hospitalization in which we weren’t sure if Faith would ever return home and even if she did we had many concerns about her quality of life. We are beyond grateful that the horrible episodes of agitation Faith was experiencing have gotten better. The episodes were absolutely heartbreaking and we felt nothing but helpless as she suffered. I’m not sure that we will ever truly recover emotionally from this experience as I think we will always be on edge knowing that there is great potential for things to get bad again. We know that Faith will likely continue to have disease progression and that she could have triggers again in the future that could cause more neurological problems. For now, we are just going to enjoy her being home and all being together as a family again.
We feel that Faith’s quality of life is better at home and since she no longer requires intensive care we are going to do our best to continue to manage her care at home. We have an extensive plan of action along with a rescue medication plan if Faith has issues at home. Faith is heavily medicated yet still having challenging dystonia, chorea, and agitation. She also continues to struggle to fall asleep despite her sleep medications that helped her in the past. We know that Faith is showing many signs of disease progression and that she continues to have many struggles. Her oxygen requirement has increased and she needs oxygen regularly now when she is sleeping. We also have concerns with her having longer and more frequent pauses in her breathing so we will be doing home apnea monitoring. Even though no test can tell us what changed or triggered all of this, we do know Faith’s brain has changed in many ways. Despite the challenges and struggles, everyday is a gift and every smile and happy moment from Faith is sunshine in our day. We are continuing to keep her involved in activities as much as possible. She was able to participate in Variety camp this summer in a part-time capacity. She loved pool and music time as always! If all goes well, she will be starting kindergarten in August! She will need a great deal of support in her school environment but we are confident that we will have a good plan in place for it to be a positive experience.
Twelve weeks in the hospital tore our family apart so we are trying to get back on track as we adjust to Faith’s new medication schedule, treatments, and new baseline. We thank God for giving Faith more life to live and the ability to keep brightening the lives of others that get the privilege of knowing and loving her. She is an amazing little girl who continues to help us learn and grow in so many ways! Thanks for all the love, support, and prayers for Faith and our family!
Keeping the faith always,