Family of Alivia Turner financially

Hi my Name is Nicole. This is Alivia Turner and she’s 15 years old. She can not walk or talk and now nor can she eat on her own. She is in a wheelchair. Her parents do everything for her she cant do anything on her own. diagnosis is Tubb4a which is Leuko dystrophy. She has been having trouble swallowing and choking. So she was referred by her family dr to Children's to do a swallow study yesterday. They found out she is aspirating while she drinks which it's going into her lungs. Nobody knew as she wasn't showing signs that it was in her lungs. This is a major part of why isn't gaining weight or using the restroom properly. She isn't getting the nutrients like she should as they aren't going where they need to be going. They said yesterday she needed a NG tube put in right away for her safety before things get worse. They made arrangements with her drs and GI dr to come in today and be admitted into the hospital to insert the NG tube which is temporary til they can put in a GTube that will be her main source for liquids. They have to start using a blender or chopper to chop up her foods. To make them pretty much look like baby food to feed her. They have to completely learn a new feeding life style for her. My husband had to take FMLA from work due to her coming to the hospital and staying in the hospital and with his job he doesn't get paid for FMLA and he has already used all of his vacation due to all of her other appointments. He is the only one working in the home as I stay home to make sure I am there for all of her in town physical therapy and speech appointments. Plus if the school needs me. I have to be close if there is an emergency. I don't do well with city driving either. Also my husband has to be here with these appointments to learn the new things that we have to plan for along the way with her. Also they wanted us both here learning how to insert the NG tube to make sure we knew how it works and how to run it. We have to make sure our daughter is safe. We also have 3 other girls at home that we have to take care of as well. Our girls are our life. Alivia has been going through all this since she was 6 months old we just never thought we would be changing how we feed her. We also learned that there will be things covered by insurance and things that may not be covered by insurance they just are not sure yet. This is alot to take in for us as it's completely new. With my husband not working right now til we get all this figured out on how she will handle everything or how long we will stay in the hospital he won't get a paycheck so we are stressing and we are ones that don't like to ask for help. We would rather help everyone else than ask anyone to help us.Thank you everyone for Reading and sharing God Bless you.