The road ahead.......

So......here we are......still in the hospital wondering what is next. I am not going to lie, it is really hard for me to write on the good ol' blog today, I sometimes wonder if it is ok that I even get on here and write. My sweet little boy is fighting, fighting for his life and it is so incredibly sad. It breaks my heart in a million pieces and I'm not sure if I or anyone will be able to put it back together again.

Not all of our questions are being answered, not all of our hopes are being supported. We are in the middle of facing THE HARDEST decision WE will EVER have to make in our entire lives! I know this.

Sweet sweet Kaizen Krew is still on a breathing tube, he is on very minimal support, but he is still on it. The doctors believe that he has a degenaritive brain disease. That his brain is slowly worsening and there is nothing they can do to stop it. He isn't smiling and laughing like he was, It seems like he's not recognizing who is mommy and daddy are and o how that hurts, how it cuts us deep. He smiled once and laughed a few times......it made me so happy, my soul smiled inside. The doctors aren't very positive. They are telling us that his neurological status will never be normal, that he may never talk, never walk, not live very long. That his future will be filled with hospital visits, surgeries, ultimately sadness. They are going to do a trial breathing today, where they leave the tube in but turn down the machine and see how he breaths on his own. They are hoping to take the tube out tomorrow if all goes well. It is possible that he will fail and have to have the tube back in........bringing up again the decision that will affect our lives forever.

I know some of you are thinking how amaizing it is that we are so strong, but I must correct you.......we fall apart at times. We hurt so much it is indescribable! I would never ever wish this pain on my worst enemy. Josh and I have talked about life without him, it's not enjoyable at all to talk about as I know all of you know. It's hard to imagine because we don't want to believe we have to go through it, that we have to live it. We aren't afraid of where he is going, I think it's safe to say that our faith is strong enough in that aspect. Whats scary is how WE will be here left without him, how we will feel with something so incredibly important to us missing. But is he really missing? Is he ever really gone? No. Not at all. We will get our chance to raise him again. I don't want to be negative and say that he is going to pass away. But I want to share how we feel about that right now if it should happen. We don't want him to suffer, we don't believe in that. We come down to Earth to obtain a body, maybe it was God's will that his time on Earth didn't need to be long, that he has already fulfilled his calling. Only time will tell. For right now, we are going to take my dad's advice and live day by day. Love him, talk to him, let him know how much he means to us, how much so many people have so much love for him. It is amazing how many lives this little angel that we get to call ours has affected. Anyone who comes in contact with him feels a connection, feels a spirit from within him that I just can't describe.

getting geared up for another eeg

his army helmet...:)

 

 

I am not sure when I will get a chance to write again, so I wanted to update you as much as possible for right now. Thank you for keeping our family in your prayers. Thank you for caring so much about us. It means the world to us. God bless.