What Would Happen To Julianna?

Julianna has a very complicated medical history. She was born premature and had major surgery the first day she was born. Part of her bowel was removed, she had sepsis, pneumonia, a heart defect, hydrocephalus, positional deformities, severe bruising and pretty much everything a preemie can suffer from. She has now been diagnosed with cerebral palsy, autism, hypothyroid, adhd, ehlers danlos syndrome, apraxia and asthma. She has regressed to the point of being non verbal and is trying to learn how to communicate with an electronic device that we call her talker. She once spoke, sang songs with me, spelled her name, memorized books, knew her shapes, numbers..everything her peers were doing, she was a little behind, but progressing. We were told not to worry because of this as she was learning at her own pace. Then things started moving backwards. Julianna's words were coming together, sort of mashing up into things that were harder and harder to understand until all speech was gone. All areas showed regression. Potty training went backwards, fine motor skills, attention..swallowing difficulties and drooling became more evident. We don't know why and are working with her medical team to find an answer. She did have a stroke in utero which left her with some brain damage on her left side. During a more recent mri we found out there is possibly brain damage on the right side as well. We actually see a new neuro this month to go over all of her films and history. I have ehlers danlos syndrome. I was unaware of this until after my pregnancy. This led to many complications. I had many episodes of heavy blood loss where I was admitted to the er, my water broke at 27 weeks and I was then admitted to the hospital until I gave birth at 29 weeks. The pregnancy was very hard on my body and I have become progressively more ill. I have had brain surgery for chiari malformation, spinal surgery for advanced arthritis, I recieve fluids twice a week by iv at the hospital to help me from passing out on a regular basis. I am primarily bed bound due to pain, fatigue and episodes of fainting. Julianna's father cares for the both of us and has little time to make as much money as we need. Julianna can not be left alone or be out of eyesight for her own safety. We currently have one person who can watch Julianna for us. This person is trained to work with special needs children, but also truly loves Julianna. This person has agreed to be a permanent part of Julianna's life..even as far as adult adoption. This fundraiser is to help raise money to go toward our legal fees. We will need to have two last will and testaments, a power of attorney and a patient advocate along with setting up an ABLE account for Julianna. All of things are a necessity especially with my poor health. We want to make sure that Julianna continues to have all the supports and love she has now in case of an emergency. Julianna will most likely need someone to care for her for the rest of her life and we want to continue to be a part of this planning regardless of any emergency or circumstances. This planning is vital in having a special needs child and any donations will be beyond appreciated. Thank you so much for taking the time to read about our situation.