Goodnight Peter!

Peter has been getting up at night the past few weeks to ask for water and then to do the toddler-thing and refuse to go back to sleep. "Let me have the cup Peter." "NO." "Well, you need to lie down, Peter." "NO." "Yes, you do. Your diaper is wet and I need to change it." "NO." He protests very loudly at this point and I remind him that everyone is sleeping. "The trees are sleeping. Don't wake them up." "Flowers?" "Yes. The flowers are sleeping." "Kisty?" "Yes, Kristy is sleeping." "Pat?" "Yes, Pat is sleeping." And we go through the names of his nurses and therapists. The fact that he has woken up any family members doesn't faze him and we go on listing other people/things that are sleeping until he decides he can in fact let everyone/everything continue to sleep by being quiet and going back to sleep himself.

Last night was a particularly long night of protests. To try to emphasize my point that it was time to sleep and he needed to settle down, I looked at him face to face and then went on further to talk about the animals he was keeping up. "The birds are sleeping, Peter. And the dogs." "Bees?" Surprised he made the leap to animals with me, I said, "Yes, the bees too." "Turtles?" "Yes, the turtles too." Now I am just amazed that he is going on this tangent with me and listing just animals. "Giraffes?" "Yes, giraffes are sleeping." Peter growls. "Yes, the lions are sleeping too." After he gives a lower growl I tell him, "Yes, the bears are asleep too. Now you go to sleep Peter." "NO." Ahhh, the great discoveries and trials of toddlerhood!

Mystery CRP, walking and talking

Peter's CRP has been elevated for the last month. It began to go up the last time Peter was ill - when we discovered what we think is a connection between enteral flagyl and his last 3 bouts of illness. No one yet seems to know what to make of it, but it is not going down. Peter has not grown anything from culture, doesn't act in the least bit ill, and temps have been good. The rest of his labs have been stable too. In fact, the last set of bilis went down again. Unfortunately, the CRP elevation still leaves us unable to test his bowel with feeds, as it could be an irritated bowel causing the CRP elevation and we don't want to stress things further. The bouts of illness also coincided with the increased clamping times of his G-tube as well as with the enteral flagyl, which we stopped at the same time we took away the enteral flagyl. We don't really know which caused Peter to become ill each time. I am voting for flagyl since that would be a simpler answer. But since we don't know and CRP is still up, no clamping, no formula feeds, no real testing of the bowel's function. We may have to wait for more hospital tests to be performed when Peter goes to Boston again before we can move on testing the bowel function.

Meanwhile, our little guy is learning to walk solo. He is just doing solo steps in spurts, but he is doing it. He gets scared to hold onto nothing though. It takes a good amount of coaxing until he practices several times going back and forth between a person and the couch. When he walks around the house though, he is barely holding on to one finger of one hand of the person walking with him. He really doesn't need the support much at all. The little car walker is really only for outdoors now, as he has gotten so stable walking indoors holding a finger.

AND our champ is beginning to talk! Speech came to see him after a month, and she was thrilled with how much he is speaking now. We had been trying to use a combination of sign language, picture communication book, and speech for the last few months. This last couple of weeks Peter has been repeating what he is asked to say (with some toddler variations in the way the words come out of course). He is FINALLY saying the word "NO," and I have never been so excited to hear a toddler say no. "Peter, we need to change your diaper." "NO." There are pros and cons of course to a toddler who can communicate that he does not agree with your plan, but better he say no than just yell about it. The hard part is not smiling when he so cutely says "NO." I don't want to encourage that too much!