This week Katie was able to move back up to the 11th floor, which is where she was to begin with. The reason they brought her down to the 10th floor which was the Progressive Care Unit was because they wanted to keep a closer eye on her because of her temperature and blood pressure. Therefore, it is a positive thing that Katie was brought back up to the 11th floor. They also did another round of Pheresis this week along with giving her a steroid after the Pheresis. They gave the steroid the last three times as well. Right now the doctors are just saying that it is going to take time for Katie to get well again and that it is not something that will happen over night.
The staff at Barnes has also been working on getting her a mouth piece that is fitted to her mouth. She has went through two other ones already and tore those up. The reason they want/ we want her to have a mouthpiece is because she is sucking on her lip and making it swell, biting her tongue and grinding her teeth. All of these are symptoms of her condition so it is normal for her to do stuff like this and she does not have any control over it. However, we do not want her to tear up her mouth or damage it so that is why she needs the mouthpiece. The two that she had before were not very comfortable and it rubbed against her lips. So one of the nurses who used to work in an orthodontist had a wonderful idea of the type of mouthpiece Katie needed and so now the staff their is working towards getting Katie that type of mouthpiece, which is a wonderful blessing.
Another thing that Katie has been doing this past week that she was not before is she is sitting up. When I talked to my mom she said that Katie would sit up for a little while and then lay back down, then sit up again and lay back. This is another positive sign.
Also, since Katie has been moved to a different floor and is in a different room so her room number has change. When sending Katie mail please put the room number 11469 instead of the other room number that I had on here before. If you have already sent her mail at that room number it will be fine and they will get it to the correct place.
Here is a YouTube video that I found about a lady who had Anti-NMDA receptor encephalitis and it explains and shows some of the things that Katie is and has went through. Now the lady in the video had a tumor on her ovary which is usually found in the women who have this condition; however, Katie does not have a tumor and that can also happen. I would also like to remind you that not all of the symptoms that this lady had are the same as Katie's. Katie does have some of these symptoms but not all of them. In this video there is a second part to it and I never watched it so I am not sure what it contains, but it was about a gentleman with a mystery diagnosis. In addition, if you have young children you may want to watch it before you let them watch it. There is nothing bad in it but it can be kind of scary to a young child. There are some websites I am also going to link on here if you would like to check them out. They will have some information about the condition.
http://www.youtube.com/watch?v=x-GBg7O_M0k
http://www.susannahcahalan.com/the-book/description/
http://www.scientificamerican.com/article.cfm?id=brain-on-fire-my-month-of
Thank you again for all of your prayers and everything all of you are doing! My mom and I truly appreciate it and we could not get through this without that. We just have to keep trusting in the Lord and know in our hearts that He is in control of everything!
No matter how your heart is grieving, if you keep on believing the dream that you wish will come true.- Cinderella
