Sorry for y'all that read the carepages last night and waited for pictures - I never got them up. Instead I spent a couple of hours talking to a new friend in Maryland. Her son Ryan is 5 and is going through much of what Peter is too. While I talked too much as usual - it gave us an opportunity to compare notes and she made me feel much better about the support we are getting locally. One of the top specialists in the USA for pediatric pulmonary hypertension is at TCH and knows Peter's case from when Peter was admitted last year. She also sent me pictures of Ryan when he was little and the resemblance is remarkable - same big blue eyes and blonde hair. Ryan is having procedures done next week to determine the status of his pulmonary hypertension - please keep him in your prayers too. Quick update - Dr. McCaffery talked to TCH today and described Peter's case. They agreed it made sense to have Peter evaluated in Denver, so now we are waiting for them to contact us so that we can set up the appointment - yeah! I also talked to our cardiologist Dr Duster and gave him the status. He was disappointed with the delay locally for an appointment and is supportive of Peter going to TCH. He did however indicate that if there is a lengthy delay up there too he will start ordering the tests that need to be done and evaluate them himself with additional support of specialists - instead of waiting for an appointment with an actual pulmonologist. I mentioned to him my desire to have Dr. Ivy at TCH. Dr. Ivy is the pediatric cardiologist with a specialty in pulmonary hypertenstion that I mentioned above. Again Dr Duster was supportive. So it seems we have marching orders, and just need to get the times set up to get the tests completed. It is so comforting to know that we are no longer sitting back and hoping for the best, but actually taking the necessary steps to help Peter get better. And speaking of my little angel - there are new photos posted so please check them out. These are of one of our more successful attempts at self feeding - but the pictures speak a thousand words so I think it will be clear how he did. He was proud of himself, just as we are too. I have to share Peter's budding love of music. As you know Peter has had music therapy once a week since he first came home from the hospital. Cathy has worked hard with Peter on making choices, sitting, crossing midline and introducing sign language. Well, Mr Peter has taken his request for music to a whole new level. Not only does he rest and eat better if you sing a calming song to him - but now he is asking for songs. He will say "ba-ba" to which we respond with "Ba ba black sheep" and end with the third bag of wool going to "Peter Bear" who lives down the lane. When we are done he will wait a few seconds and say "ba-ba" again and we sing again, and we follow this routine till honestly we give in and re-direct him. Every time you get to "Peter Bear" in the song he smiles real big. He also loves the song that starts "Down by the station, early in the morning..." and when you get to the part that talks about the station master pulling the little handle he will reach up and pull your finger. Cathy has been working with him for months on that. But he knows when that part of the song is coming up and will look for "the little handle" to pull. So here is where Peter has cracked us up beyond belief....he has taken to Stevie Wonder - remember him? Well, a few seconds into a song if he likes it he starts swinging his head back and forth "a la Stevie Wonder".....and then if we stop singing and he wants more he'll start rocking his head back and forth until you sing again and then gets a big smile on his face. It is just too funny - we really should get it on video! For you who know me well - I am extremely challenged musically with a repetoir of 5 songs - so a testament to Peter's loving heart that he puts up with my singing! Thanks for your support & encouragement! ck
