Definitive Plan

Got a call from NE today. After talking with Caed's dietitian, they have decided to hold off on the weaning process. Our main goal is to get him stabilized. So, it looks as though we will stay on 500ml feeding through the remainder of the summer. Then.....we will slowly begin decreasing again as school starts. They also told us they are seeing several of their sbs kids experience severe cramping when coming off the feeds. THAT explains it! Finally....I get a legitimate reason in my head for all the issues we've been having lately. All of this started when we stopped his nightly feedings. I guess 500ml is not quite enough for his body to compensate on its own....as previously told to us. Caed just might be a little different than the "sbs norm" and that's ok. We will take this thing down as low as we can go....if needed. His pain spells are becoming less frequent and less intense. Praise God for that!

We haven't quite broke the news to Caed yet. And we need to rethink the bed situation. Caed and Caleb have bunk beds and the plan was to move Caleb to the bottom bunk (from crib) when Caed got off all tube feeds this spring. Then, Caed could officially go to the top. Ughhh.....now I'm not sure what to do. I guess if Caleb is not trying to crawl out of his crib, I should be thankful and let him go as long as possible. There is no way I can let Caed go on to the top and still be hooked up. I cringe just thinking about all the possible disastrous scenarios. Oh well.....if a bunk bed is the greatest of our worries right now, then we are BLESSED!




We are in FULL swing with baseball and softball these days, and spending every waking moment after school at the ball field. If I had of known how crazy it was going to be, I might have rethought both Caed and Reagan playing at the same time. BUSY-BUSY! I will post pics soon!!!!
They are both loving it!!!!