Trick or Treat Hospital Style

Happy Halloween! Avarie dressed up as Ariel. The hospital gave her a halloween costume. She had planned on being a princess back home, but we hadn't brought the costume here yet. So last night the hospital came around with two carts full of brand new halloween costumes and let the kids all pick any one they wanted to keep and wear for the parade today. The entire 3rd floor is the childrens floor so they turned it into the parade grounds. They handed out toys and fun things instead of candy. The hospital does so much for the kids here, trying to keep them happy and active. I am so impressed with the things they do to try to help the kids on an emotional level and not just treat the illness. Avarie of course is not responding well to all the fun things yet, but I am hopeful that she will.
The psychiatrist came in and talked to me for a while. He is very concerned about her. He feels she is definitely depressed. He said he would rather see her mad and angry then how she is acting. He took her feeding tube as an example; she has not once asked about it, touched it, tried to pull it out or ask me to take it out. She completely ignores it. He would rather see her angry about it and yell about it, even try to get it out. Its not uncommon for kids her age to pull them out. She does none of that though. She just ignores it. That has him troubled. He says he is going to keep a close eye on her while she is here and have Child Life start coming in a lot more. Child Life is the organization here that comes in and plays with the kids and tries to get them to intereact with others. There main job is to try to make the kids happy. I think they have the best job in the hospital. He did tell me that the Nuerologist, who came in again today to do a second evaluation, feel very strongly that there is something more going on then Depression. They all feel very strongly that she needs the electrical impulse shock treatment to see how her nerves and muscles react. I have heard again today how not fun this is test is. The oncologist mentioned there is a drug that can make you not remember and she is going to look into seeing if Avarie can have that before the test. They are planning to do the test some time early this next week. We will definitely still be here until at least Tuesday at this point. They are also going to be doing physical therapy with her everyday. The therapist said they want to take it slow with her and just try to get her to play with them, but that they think they are going to have to teach her to crawl and walk again. But for now they just want to work on sitting and playing.
Its hard not to feel overwhelmed by all of this. I am feeling like my baby is falling apart. It feels like she has just given up and we need her to fight. She has to fight for her life to survive this. I think we all know what happens to people who give up when they have cancer. I won't let that happen to her. I am just so grateful that all of the Dr's are taking this so seriously.
On a more positive note, I am so overwhelmed with emotion for all that my family and friends are doing for us right now. Especially my mom and sisters and sister-n-laws. They have been working so hard to put together this garage/rummage sale. They have been at the grange every night this week until midnight setting up and pricing things. I know they are all feeling overwhelmed and tired. Honestly as much as we need the financial help, I am more concerned with the sale being a success because of all the hard work they have done. I want them to feel a sense of accomplishment to have put together something so big in such a short amount of time. They are amazing people. Honestly I am surrounded by amazing people. This whole experience has made me see my entire life so differently. There are people that I have known my whole life and then there are people that I have only known a short time all chipping in to help make our life a little less stressful, there are even people that I don't know and have never met that have offered help. My whole family is so overwhelmed with the outpouring of love and help. I have actually received 3 phone calls at the hospital from different family members who all called me very emotional about the amount of support and love they have seen. My husband and I are so grateful to everyone. It is so hard to put in to words what it all means to us. This has been a very hard time for us emotionally, physically and financially and yet we have so many people stepping in to try to ease all that they can from us. Thank you all so much. It eases our burdens so much and allows us to focus on our children and trying to get and keep them all healthy and happy.