The life I lead

Caed had his labs drawn last Wed. before we headed out of town. So far, we still have not heard anything. Some of these tests take several days, so hopefully we will hear something today or tomorrow.

As far as the leg pains.....I TRULY believe they are simply "growing pains." However, we are grateful to Nebraska for being pro-active in the matter. Because of Caed's condition, you just can't be too careful. Our next appt. is the week following Easter. He is scheduled for a scope (under complete anesthesia), a small bowel series (barium test), and also a bone scan. I hate that he has to continue going through all this, but tests are good. They show us what truly is going on "inside."

Although our family lives, eats, breathes Short Gut, there honestly are days I consciously don't "think" about any of it. I just administer the meds, hook and unhook, mix formula, write in Caed's poop journal.......but yet not really contemplate what I'm doing. Just becomes routine. I thank God for that! However, last night my parents and I began discussing again ALL of Caed's history, his present condition, and thoughts of the future. The last 24 hrs. have been as though I am living in it again. Several days ago, I came in contact with more "short gut" moms across the country. Hearing their story and then sharing ours......it's a mixture of great encouragement and incredible heaviness. I love talking to others. To compare. To receive more information. To be reminded again that we are not alone. The circle that Todd and I walk in.......can be a lonely one (as far as Caed's condition is concerned). Sometimes it can be hard when all others "see" is a normal, 5 yr. old boy running and playing. They assume all is back to normal. However, to talk with other moms and dads who deal daily with SBS, can be very reassuring. These people KNOW....they don't just sympathize.....they live it too! Some of our Short Gut friends are struggling GREATLY! They are fighting for their life as we speak. Some others are a step or two ahead of Caed. They provide a wonderful encouragement and "light at the end of an enormously long tunnel." Everyone is different, and yet all these precious kids share that one thing is common. Short gut.....and the difficulty of getting what little is left....to work! The one area that I have been a little discouraged by is the fact that ALL these other SBS kids began their struggle at birth. I have yet to meet or hear about another child that experienced a spontaneous malrotation like Caed. He seems to be in a field all his own. While there are numerous similarities, there is also a HUGE difference for me. I knew Caed for 4 1/2 years as a healthy, normal little boy. All of the other SBS kids I am in contact with (probably 20-25) all had their first surgery within hours of life. As difficult and unfair as it may seem, this is the only life they have ever known. Sometime I wonder which is worse, but am quickly reminded they BOTH have their down-falls. Every illness, despite the timing of the diagnosis is excruciating.

Just a few minutes ago, I got a call from our dear friends (the Free's). Kensley's central line has broke now a 3rd time. She is being wheeled down for surgery right now. Their plan is to take out her NG tube and replace it with a G-tube (while she's under anesthesia from the surgery). To hear J and Tana's voice......to hear a Mommy's heart being torn into again. Sometimes you just feel you can't "go on" when yet ANOTHER problem arises. I know from our experience with Caed, sometimes these "setbacks" are actually blessings in disguise. Please continue to pray for sweet Kensley. Her 1 yr. birthday is just around the corner. What an amazing, strong, little girl!

*We have also had a wonderful time seeing old, familiar faces this week being back in Lubbock. Yesterday at church, Caed and I got to visit with his former GI dr......Dr. Higgins.....and then we got to eat lunch with our sweet Nebraska family (Carol and Cordell). They were in Lubbock visiting their daughter and family. All of these people have become so dear to us. Each one had an instrumental part in helping us get through this past year. God is GOOD!!!!!!!