Small Steps

Avarie continues to improve little by little. She was awake several times yesterday and was able to do physical therapy and occupational therapy. Not that she didn't cry and resist both, but she did do it. They have to do her therapy in her room because she has no immune system and can not leave this room right now. When I talk to her I can tell she is listening to me and she looks at me more. I can tell that she is slowly improving.
One of the Oncologist, Dr. MaGan, told Craig yesterday that they have all been stumped by Avarie. She said during their morning meetings that they hold every day they have all been trying to figure out what is going on with her. They had gone back over several of their cases in the last 6-7 years looking for anything that might ring a bell, but there was nothing. Avarie is one of their most unusual patients. In a strange way this made me feel some comfort and some fear at the same time. They feel like her improvement is a combination of the chemo and antibiotics, just like I thought but also they have been giving her some phosphorus and calcium and albumin through her IV. They think the phosphorus has been a big key too. Phosphorus is a very important part of your body functioning, we get it through nutrition usually, but since Avarie has been so malnourished she has been very low on it. I'm not exactly sure why because I haven't been able to talk to the Dr yet and Craig doesn't always remember all those kinds of details, he tries really hard, its actually really cute how hard he tries, but he's a guy and well guys just aren't great with the small details. I know that was probably totally sexist, but come on its true most of the time. Anyway I will be asking the Dr some of that today when I see her.
Right now Avarie is down having a CT Scan of her head, chest and pelvis. She continues to run high fevers around 103- 104 degrees several times a day. They can't figure out why all of her blood cultures keep coming back ok and so they are doing a CT Scan to make sure they aren't missing something. They also did a chest x-ray yesterday, but we haven't gotten those results and no news is good news here. If it was something bad they would have been in right away treating, so the fact that we haven't heard anything means things must be ok. I'm just sitting here waiting for her to get done in CT. I will post later on any results.
One quick comment. I heard recently a couple comments about a few people not liking the pictures I posted of Avarie. I just want everyone to know why I post the pics. There are two reasons behind why I do that and why I share in such great detail everything that is going on here. One reason is I want to fully document this for Avarie, so that she can look back on everything she went through and see how far she has come and how strong she is to have endured so much. The second reason is I have a lot of friends and family that can not come visit and I want them to be able to see what we are facing. It is definitely different to see it, it makes it so much more real for people and this is a very real thing we are facing and I want all who care and love us to be able to see the full extent of what we are going through. I know it can be hard to look at the pics but they are our reality right now. So I hope no one is too offended by it all but I intend to keep updating the same way because this is my way of creating a complete record for Avarie and for all of you.