So our cute boy decided he still doesn't like to breathe at night and even at times while he's awake. So after his tough surgery at the beginning of the year and the steps to control his reflux we're right back where we started from. He will be on night time oxygen and he will have a new sleep study (that we pushed to January for financial reasons, with Dr approval of course), new scopes and possible pulmonary testing.
I've been a bit spent and exhausted today. In exploring my reasons, when it could really be worse; I think its like this: you do things thinking they will make something better. You start living life like things are good. Then something like this shows you not only is it not but somehow you missed the signs that they weren't. How can you miss it? So its like you really try to push yourself into denial because you just don't want to believe it and you think there must be some mistake and yet you are still making the phone calls and making the plans to find out what is wrong, yet its this surreal process of going through the motions but really just wanting your life and the life of your child to be "normal". To just not worry about this, to live in blissful ignorance. To just live. Sometimes that is my greatest wish of all, to just be.
Truly we've had a good few months run really, fairly uneventful; so I really just need to appreciate that. But for today and maybe tomorrow I'm going to induldge my emotion as it stands and then just pick up and move forward. Enjoy the 4 months we have before we have to worry about any tests or further intervention and just be.......
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