Life

but life is just life, you know? whatever happens, happens. Tyler told me this last night in the midst of a conversation we were having. It kind of shocked me when he said it. I mean I was already crying and boom. He just acts too old for his age sometimes. He knows too much because of what this disease has put him through and I hate every minute of it. The same disease that has robbed him of his childhood, hasn't let him be a kid or let him go to school. He told me he likes having someone just like him (referring to me) because sometimes he feels likes he's alone and the only one. He isn't like everyone else and as he is getting older he is realizing that. We carried on the conversation while I was doing IV medications and talked about some other things. I feel like I just have to promise my baby boy he will be okay. Everything will be okay. I know it will. Don't worry Tyler it won't be like this anymore. I know that. I love you okay? I promised him one thing last night. I promised him one day we won't be sick anymore. One day we won't be sick. We won't need lines anymore. We just won't be sick. I love you I said just holding him in my lap hugging him. I didn't even know what to say to him anymore. The last thing I say was. You are so strong, buddy. Just keep fighting. I'm always here if you want to talk about anything and I left his room. I don't know what to say anymore. So much he said last night. Just so much that I wish he could realize. Or understand so it wasn't so hard  but to be honest, I'm not even sure I understand any part of what is going on right now. He keeps my head up high on some of the worst days. We will survive all of this. The entire conversation we had last night will always be a secret kept between the two of us and it will always be one of the most special moments in my life.

but life is just life, you know? whatever happens, happens.

I'm Feeling Eh

I have been feeling really bad this week and trying to keep up with my school work is near impossible. We started daily IV fluids because last week we soon realized I don't have enough fluid in my TPN so I became dehydrated. We are now doing daily boluses of fluids and it is helping to keep my blood pressure stable as well. I'm slowly coming off of one migraine medication and slowly increasing another. IV medications around the clock still waiting to get into Nationwide. I have to go back to doing allergy shots every week because I missed several weeks from being in the hospital. That's really just the update for now because there isn't much we can do anymore. Spirit week is next week at the high school and homecoming is on Friday. I got 98% in Spanish for this 9 weeks! It's amazing because of how much I have seat time missed. In my other two classes, I have a few assignments that need to be made up so they can't input the rest of my grades into the system but hopefully, those grades will be as good as my Spanish grade!

Home

Home... <3

I've been home for a little more than a week now and it's the best thing ever. Not being able to go to school for over a month, not being able to sleep in my own bed at night, being woken up every morning bright and early just for blood draws, vital checks, etc. Adjusting to life at home with a central line is difficult at first but it's starting to get easier. The routine of things is starting to get normal. Hooking up to TPN at 4pm every day so I can be off before school starts. We've added new medications so I have to remember when to take those. Showering with a central line is miserable having to tape it up and seal it three times around just to make sure it doesn't leak. Weekly dressing changes and blood draws. Life is moving on here though it's our new normal and will adjust any way we need to. Having two kids on IV medications, TPN, and all of the other medications medical supplies isn't easy but somehow we are making it work. I see neurology tomorrow and a new doctor on Friday. Depending on how things go with neurology we may throw a GI appointment in the mix for this week. School is going great! I'm having so much fun with my friends in class. I have an insane amount of make-up work and it's so hard to get it all done but I'm trying.

There are definitely a lot of things I'm upset about right now. Until I get this central line out I can't play any sports. meaning no soccer...Soccer was the one thing that made me feel normal. I could play without worrying about anything else. Now I don't have that. I understand that I have to have the central line for nutrition but I wish it wasn't like that. I would be happy if my stomach started working again! Wouldn't that be nice? It just sucks because right now it is the only way to keep me alive and healthy.