"My Eyes Arn't Workin!"

This morning I had to wake Luke up to take his medicine. This is not a pleasant task for me, but today it was much worse than usual. He sat up in bed, looked at me with two golf ball sized eyes, and said, "My eyes!" I was surprised to hear this because they have been swollen before and he has never said anything about it. "You are OK," I told him, and tried to get him to think about something else, like taking his medicine. He continued to cry and choked out, "My eyes aren't workin!" I realized then that the swelling had reached a new level of discomfort, and he could not open his eyes. After sitting upright for about 10 minutes the fluid started to drain a bit and he was back to seeing the world through slits, which suited him just fine. I knew he was content with the slits because he moved on to his next problem....his diaper rash. "I want to soak my buttsie!" was his next proclamation. The Prograf causes severe diarrhea, which in turn causes sever diaper rash. He has been starting everyday, and sometimes ending the day as well, with oatmeal baths, which sooth and calm his raw skin. In addition to the baths he uses soothing creams, and is sometimes given the chance to "air it out," which is scary for me, considering the new carpet, but well worth it.

My biggest concern with these side effects comes from the fact that Luke is going to catch on to the idea that he is sick. What I mean is that Luke does not know he is sick. Hard to believe, I know. The other day I was trying to get him to take his medication, and I told him that he has to take it because mommy does not want him to be sick anymore. He looked at me and said, "I not sick. No more throw up." he was referring to the stomach flu which he got over about a week and a half ago. So it dawned on me then that despite the blood tests, the doctor visits, the medicine, the swelling, the bloat, the diaper rash, and the slits that he is forced to view the world through.....Luke does not know he is sick.

We started another round of diuretics yesterday, and are hoping that he is feeling good for the Easter weekend. Alexa is well and growing like crazy. Every morning I look at her and think she is twice the size of the day before. She is the happiest baby I know and smiles and laughs whenever you look at her.

The pictures were taken this morning. They are hard to look at, but if you compare them to the first few posts, you can see that the "moon face" is going down a little because the Prednisone dose is so low. Look hard, this optimistic mom says it is so! I also notice that his thoughts are more clear and his imagination is more vivid when he is playing, and he is sleeping much more soundly, all because he is no longer in a "Prednisone cloud."

Please continue to pray for Luke to be strong and breeze through whatever may come next.