Back in the Hospital

We came yesterday for just her typical chemo appointment. That is unfortunately not what we ended up doing. I have been telling them about her lack of activity every time we come in, but since this last weekend it has just gotten worse. She has not been walking really this whole time. I could push her to walk back and forth to the bathroom about half of the time, but since her bone marrow biopsy this last week she stopped even being able to do that. She could still stand while I tried to help her get dressed after going to the potty, but over the last several days even that has stopped too. Her legs have become like noodles, when I would try to maker her stand her legs would slide out from under her. When I try to pick her up she is like a newborn baby that has no ability to hold herself up, and she weighs 35 pounds which is not fun to carry around and pick up with no help from her. It makes her slippery. When we came in to her appointment yesterday they finally really listened to me and found it really odd. They said that it was not normal. I just thought the muscle weakness was due to her chemotherapy, they said a little could be, but not this. They said that when I would say something about her not walking before they just thought that it was her extremely strong and fiesty personallity trying to have control over something. Then yesterday they really listened and did a reflex test on her, where they hit the joints looking at the reflexes. Her lower body had very little reaction, while her upper body seemed ok. They finally took my concerns seriosly, they too are now concerned. In addition to all of that, she had not been going to the bathroom which is a very big issue in a cancer child. I hope people aren't going to mind bathroom talk, because there is going to be a little. If she gets constipated she is at risk for getting a slight tear in her bottom. If that happens she is at high risk for a bacterial infection which her body could not fight, this is a major problem for cancer patients. She is also not eating as much as they feel she should. The steroid should make her ravenous, but instead she eats pretty normal amounts, she definitely has what I call pregnancy cravings, where she wants what she wants and she wants it now, but she doesn't eat to the point of throwing up which is totally normal in kids taking steroids.
So she is here for a lot of reasons.
Last night they put a feeding tube down her nose. They gave her a sedative to help with it going down. It was still not pleasant. She gagged and tried to throw up for almost an hour and then finally just fell asleep.
This morning she had an MRI. They put her under for it. The results came back just a few minutes ago, it was all clear. We also met with a nuerologist this afternoon. She said she did see a lot of muscle weakness in her lower half, and only a little in the upper part of her body. They are scheduling an electric impulse test on her muscles. They will hook her up to some electrical things and then shock the muscles and see how they react. They have prepared me that this is not pleasant. I want to say no, I don't want you to do that to her. I just can't imagine putting her through more, but I know that they need to figure out what is going on.
She also had her first physical therapy appointment today. She was not happy about it. They had her on a swing, which I actually thought she would love because Avarie loves to swing. She has always loved to swing, she would stay on a swing all day if she could. I remember deciding not to buy a swing set simply because I knew I would get no rest, she would just whine and cry to swing all day if she unlimitated access. But she did not like it today. The therapist did get her to warm up a little towards the end, and by warm up I mean they had her communicating with them a little better. She even made a halloween picture out of stickers which I think she kind of enjoyed a little. Although she wouldn't smile.
They have also called in to have a consult with the psych department. One other possibility could be that she is Depressed. They said it could be possible that the one chemo drug she gets called Vincristine does cause some muscle weakness and that along with the fact that she did not walk due to bone pain in the beginning and then has definitely become depressed could be causing her to just lay there and let herself waste away. I kind of think this is more the case. I have watched her lay there and not react to anything or anyone. She won't play with her toys, or color or even talk to her best friend Charlie or her best cousins Brooklynn and Lucy. She just acts as if no one is in the room. She ignores everything. I know she is depressed but the question is could that really be causing all of this. The Dr's think there is something more going on then just that. We'll be here in the hopsital until they get some answers.
She will be trick or treating here tomorrow. I don't think she really cares though. I think she would just lay in her bed and not trick or treat at all, but I am going to dress her as a princess and put her in a wagon and take her around no matter what. She needs to get out and move and interreact with people.
I'll update again tomorrow. I have some pictures of her getting her hair cut off on Tuesday. I think I forgot to mention that earlier. We cut off her hair on Tuesday. She wasn't losing it in huge amounts, it was just lots of lose hairs starting to fall out and they were bugging her, getting in her mouth and face. We gave her the option and she said she was ready. So tuesday we made it a big family hair cut day and we shaved Daddy's head and our son Carter's head(he looks funny) and Avarie's. Addisen(big sister) and I also got hair cuts, but we just did shorter around our jaw line hair cuts. Avarie wanted me to shave my head she said it wasn't fair that I got a hair cut like Sissy's and she didn't, but I just could not bring myself to actually shave my head.
Since I am at the hospital and I am updating this on a laptop I can't post the pictures, so I am going to teach my husband how to post the pic's. There are also a couple of pictures of her here at the hospital. So the next post should just be some pictures, unless my husband wants to add something. Sometimes he surprises me and adds little things.