Thurs. 3/13-Update

We could sum up today in 2 words: PAIN and SMILES!!! We have really noticed the pain spells to be much more intense in the last 24 hrs. They last anywhere from 5-30 minutes. This morning the dr. came by and said he could start juice today. That has been the one thing that he has wanted since this whole thing happened. Even minutes before that first surgery, he was crying for juice. When the dr. told him this morning, a great big smile came across his face! However, he can only have a tsp. every 10-20 minutes. We're needing to take it very slow to see how his body reacts to it. So far, he has done fine. We kept a very detailed log today tracking EVERYTHING!! We don't think the juice is a cause of the pain spells or vomiting. They were happening before. They ended up not doing the blood transfusion today b/c his red blood cell count was the same as yesterday. However, his surgeon said they may give him some tomorrow and that will help to perk him up. She also told us it normally takes the bowels 21 days to really begin functioning.....we are on day 8 (counting from the 2nd surgery). Caed is doing SO much better with his walking. We don't have to hold his hands now, although HE wants to. Today he walked to the playroom!! (big achievement) We even went inside and he saw a big truck that he wanted to drive. Again, another big moment, as he has not wanted to do ANYTHING!!! We also put him in a wagon and were allowed to take him outside twice today. I know the fresh air was so good for him. Another change today was taking him off his nutrition bag (liquid food) for 6 hrs. at a time. It made it so nice to walk or ride in the wagon without having to drag along the pole. The plan is 18 hrs. on the IV, 6 hrs. off. They also took him off his pain med (Demoral). However he is getting Motrin and Tylenol regularly. (which don't really do much) It was a very hard day for Caed physically. He didn't get much rest. We are posting these pictures of Caed to share with you our recent "joy moments." Like our good friend Greg (aka. Jack) said, they show the power of prayer in a single smile!!! Oh how true that is!! Thank you God for them! However, we also want you to realize 80% of Caed's days are spent in pain.....these happy moments are so few and are scattered throughout the bad ones. Please continue to pray for him! There is nothing we can do to alleviate the pain when he's having a spasm. We basically just have to wait it out. It is very difficult to watch, and you want so badly to take all the pain away and carry that burden for him. Our prayer now is that the spasms become less frequent and not as intense. He is one tough little boy and it's so hard imagining all that he has and continues to endure. Something that I have been speaking over Caed throughout this whole ordeal is "JEHOVAH-RAPHA." (which means THE LORD WHO HEALS!!!!) We ask that as the Lord brings Caed to your mind, you would also join with us in speaking His Name!!! We have already seen his healing power and have faith that He will continue.