Saturday, December 5, 2009


Where did the month of November go??? Have you ever had that feeling that a month simply slipped away? For me, it just happened. My brain has playing tricks on me, and I have not been able to keep up with this site at all. I can see that my mom has done a good job keeping you all updated. I have sure been on a journey I don't wish upon anyone.
It's December, and Christmas is around the corner! I so want to come home, and see our Christmas tree and be with my sister. It's about time, don't you all think? I am also hearing our aunt Jenny is on her way! I would love to play with her at home, and not from the hospital bed as last year.
My nurse Lukas from the PICU came and checked on me this morning. He told everybody on the floor that I look SO much better. I guess he should know, always being there when I feel my absolute worse. I do agree with him. I have been sitting up in my chair for the first time in over a month this past week. I do get tired after about thirty minutes, but will slowly build up my strength again. I also started to work on sitting up and head control again. Oh man, is my head heavy! Just imagine that you have been in bed for over a month not using those muscles. I know I have a long recovery ahead of me. They have also started to take me out of my room for baths in this huge bath tub! I love to play in the water!
They don't think I hear them, but I do. They are all puzzled over me. None of the doctors has ever seen a kiddo like me. I never follow the text book. I typically get away with it with my big smile! They finally seem to realize that I want to do it my way. Medication measurements simply don't mean anything to me. I don't know how many times I simply have to laugh at the doses they give me.
The one time that was really hard on me was when the medical team expected me to wake up on a Friday from my coma, but I was all ready to go Monday morning and get the breathing tube out! Everyone was concerned how I could already be awake at such a high dose of Pentobarb! Read my chart!!! They had again forgotten how used my body is to drugs despite me being little. I finally got my way when they took out the breathing tube on Tuesday morning, a couple of days earlier than expected. I also did great breathing on my own to my mom's and dad's delight.
Did you know that a frequent flyer like me get my primary team of nurses here? I now have so many nurses fighting over me on the 8th floor that one of them was upset the other day when she didn't get me! That's a nice problem to have in here. They love my smiles, and love to play with me.
Did you also know that I got my Christmas shopping done yesterday? Make-A-Wish had their Christmas store at the hospital yesterday. The child life therapist on the floor went down, and got my shopping done. All wrapped, and ready to go under the tree.
I am hearing the Harley Davidson toy run is tomorrow. My dad will most likely not let me leave the room despite me not being on precautions any longer (yes, you know him!). My mom checked, and they will also visit the kids who can't leave their rooms.
Tomorrow evening, I will start fasting, and get ready for that magic seizure diet. They will slowly get me used to the diet, and hoping that I will be in status ketosis by Wednesday. This is one of the times I am so happy about my g-tube. Do you know what a kid's meal look like on the diet? Here is one example: 2 ounces of heavy whipping cream, 1/2 scrambled egg, 1 tablespoon of butter, and 1 tablespoon of unsweetened applesauce. Yikes! No happy meal to me. The idea is that we should burn fat rather than carbohydrates. On the other hand, what kid wouldn't eat whipped cream several times a day in return for not having epilepsy?
My sister will come and spend the day with me on Monday. I miss her so much, and not sure why they don't let her in here. If they would only know that she's my best medicine, they would probably have her quit school or something...
Now, it's movie time. Mommy and I will watch my new Elmo movie together.
Thank you all for cheering for me, and all the things you do for me and my family! You guys all rock!
Love, Jacob

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