Peace

Tonight I saw the moon as it was setting and it was beautiful. The sky was a pink/blue and the moon was huge. It truly was a spectacular sight. As I was driving and observing this amazing sight I had an overwhelming sense of peace. I had the thought that if someone could creat something that beautiful, He certainly is big enough to lean on and trust with all of X's unknowns. Maybe that doesn't make a whole lot of sense, but in that moment it was crystal clear. (I still wouldn't mind some inside info as to what's going on with X. You know, like a hand writing something on a wall or even a donkey telling me).

I needed that tonight. Last night X woke up around 3:00am with a wet shirt. Stomach fluid had leaked out from around his button. I checked the amount of water in the balloon that holds the button in place. It was short 1.5 ml. I filled it up and the leak stopped. I know this can happen as the tube gets older, so I am really praying that this tube lasts until Oct. 15.

I've also been reading more up on feeding disorders and feeding tubes. There are so many things that could be wrong with X that are very difficult to diagnose. It's overwhelming and I feel nauseas whenever I am on the sites or pages or blogs. To be honest, I would rather hide my head in the sand than read about these things. X may not have any of these things, but just the mere possibility scares me.

X still isn't eating anything. I think he ate 20 calories today. He did get all of his tube feeding though. It is so frustrating because he gets so cranky. We had to leave our favorite nature park today before we got our hike in because of behaviors and I had to wait until Craig got home before I could run to the store because of behaviors. It's hard to know what to do. I know I still need to parent X, but I also know that 95% of the behaviors today were from not getting enough calories. It's a hard balance to find.

We did up his rate by one ml/hr tonight and he has done fine with it so far. He is up to 90 ml/hr right now. That is pretty amazing for him. Praying and hoping for an uneventful night.


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