It's getting close but feels so far away...

Since my last post, I was correct in determining that Lucas was indeed getting close to another flare up. Since last weekend, he's had several days with flare ups. Yesterday was by far one of the worst days. He had 5 flare ups and I'm in the process of keeping a detailed food/drink journal for Cincinnati. Here's a pic of him sleeping from his exhausting day

You can almost see his rib bones. He was worn out but a trooper through it all. He kept saying he was hungry but he couldn't keep anything on his tummy.

We leave for Cincinnati in 3 weeks. I'm getting excited but nervous and anxious at the same time. It doesn't help that Brandon (hubby) isn't very thrilled about going or understanding the purpose behind it. He doesn't understand (or chooses not to) why our local team can't help. They can and they have to some degree but I feel that with the wonderful resource of the Cincinnati staff who understand this disorder moreso than our local team, why not!?!?!?! What is it going to hurt?

On a side (and happy) note, Lucas has been taking swim lessons. At first he was very awkward in the water but he is finally getting used to it and LOVING it. I think it also helps that one of his best buddies is in the class with him.

Here they are waiting for class to begin.