Saturday

Another family filled day today! Kadyn had a pretty good day overall. She loved playing with her best friends Koy and Harlow and was over the moon that she was able to hang with Meme, cuddle with Uncle and laugh with Uncle Neil. Kadyn's liver enzyme levels continue to decrease and she is getting a bit stronger everyday.  I am not sure we will see total relief for her belly pain and other symptoms until we are able to get somewhere that will know how to "fix" her.  Her doctors are definitely working to get her to the right place as quickly as possible.  I am starting to see the light at the end of this tunnel (fingers crossed). Unfortunately, Kadyn will not be leaving Columbia feeling better than she did when she came.  This makes me incredibly sad.  I have always been honest with Kadyn, no matter what. She knows more than most kids should at 3 1/2, but it also prepares her for her circumstances.  I told her I would never lie to her about what doctors are doing/going to do, why we do it, if it will hurt or not, etc. She always says thank you to the doctors and nurses when they finish doing whatever they need to do with her.  We made this a habit early on because we want Kadyn to understand that even if it hurt her, ultimately, they are the ones who make her feel better.  Coming in for a routine clean out and staying for....whatever it is that we are still here for? I feel like I have let her down and in some ways broke my promise.  She is still in a lot of pain and I don't know how or when she will feel better.  

I guess I am beginning to realize some of the harder life lessons that come along with having a chronically ill child.