Reminder....

Today was a tough day for me. I was unfortunately reminded that Caed has a chronic condition. It will never go away. Although I am very much aware of this each night while hooking him up, the "normalcy " of his life is quite powerful. Since moving here to Idalou, I have had the pleasure of making many new friends. I have also had opportunities to tell "Caed's story" to people who did not know us 3 years ago. They are blown away. It is a complete shock to them because of how Caed just blends in with all the other 7-8 yr. old boys. He is just like them in every way.....except he gets hooked up to a machine each night and has a button on top of his abdomen.

Caed has been having pain spasms sporadically the past month. However, lately they have surfaced ONLY at night....and ONLY when he is being tube fed. It is so confusing to us. Any possible causes just don't add up in our heads. After speaking to NE most of the afternoon today, it was finally decided that Caed needs the "full meal deal." (scope, barium enema, and short bowel series) Then, the dreaded "S" word was used. If his bowel is dilated, there might be a need for the STEP procedure (bowel lengthening surgery!). At that point, I honestly just lost it. I guess God knew it had been awhile since my last good cry...and I was due for another one. It has been 3 years since his last surgery, and I would really like to keep it that way.

In the morning, we will go have an xray and see our local GI doc. (the one that was with us from the very beginning) Afterwards, we will get in touch with NE, let them know what Dr. H thought, and then schedule a time for us to head on up (early) to Omaha. Our plan to combine medical and vacation again this summer is probably out the window.

Please pray for Caed. Pray for answers. And pray for Todd and I to accept whatever those might be.......