Quick note

Thanks to everyone for checking in on us. We get pretty busy (and always tired, still waking to get Jerry his milk) and it is hard to stay connected. It helps us to remember how many friends out there care and are praying for us. I am a such a bad blog mommy for Jerry. I cannot believe I haven't got on to post pics or anything for his birthday!! I always have so much in my mind that I want to post and then I never have enough time when I am not exhausted to really focus and write. So I am putting all the fun pics and other news off for now. Just want to say that I finally talked with Dr. Towbin on the phone today. He was incredibly kind and gave a little summary of his impression of Jerry's latest echo. He said basically the same as our Chicago doctors but seemed a little more optimistic that Jerry could live his childhood at least with this heart being checked and staying on medication. The concern is that the scar tissue in the heart makes the heart stiff and as he grows he the scar tissue can become more dense, grow, and cause blockages or even more stiffness. There is not enough out there for him to suggest beyond 20 or so years. However, he did not get my questions that I had emailed and those may include important information for him about symptoms and such. So he, amazingly, said he would call me again tomorrow to finish after he found the questions. I probably should have stopped him during the call as he was giving quite a lot of basic back ground info on the heart and Jerry's anomoly that I am very schooled in already,. I did not want to interrupt and so now am hopeful to discuss more details tomorrow. he did say that when there are questions as in Jerry's case, that more testing may be warranted and could include a cardiac MRI and/or heart cath. Overall, I feel better and with Jerry doing really well lately that feeling is increased. But I will never not worry and understand still that, even for Dr. Towbin, Jerry is somewhat rare and nothing is for sure.

Jerry's growth hormone came back low (got the report in the mail without explanation) and I still do not know what this means. I don't know if he has a whole other disorder or if it is low because of his heart disease. I hope to sneak that question in on Dr. Towbin. I so greatful for having the opportunity to discuss him and for friends at children's cardiomyopthay foundation for helping me reach him. '

Please always excuse my grammar and lack of creative wording..so tired.

More soon...really!