cardiology appointment Wednesday!

I could write for hours there is so much to say! Very tired at 10:30 as usual. Each day feels like a rat race. There are lots of fun moments mixed in but so hard to keep up so I will just share a few tidbits briefly Even though I would love to spend hours writing and posting photos!!

Jerry's weight was 25 lbs. and 11oz. at his last check! this was really good gain for him and I think puts him almost at the 3rd percentile! He is about that percentile for height too. With high heel crocks on he was able to get on all the 36 inch rides at cedar point. He had a complete blast and wanted to go on all the big people rides! The endocrinologist finally called back and apologized and said that in the end he did not believe Jerry's results were a separate issue but rather related to past heart failure and nutrition. He was also on really, really high doses of steroids as a 4 week old infant for a few months and I really believe that could have something to do with it too. The fact that a doctor would put a kid through a blood test with out knowing how he would interpret the result is a little annoying. We didn't really need the blood test to tell us he was small!

Dr. Towbin's input made me feel that there is a better chance that Jerry's condition will stay stable and he will be able to keep his heart for childhood. However, Dr. Towbin did not really look at anything besides Jerry's last echo and said that if there are other symptoms or problems it brings questions about the accuracy of the echo and further testing is needed.

We see our cardiology team at CCMH on Wednesday and will see what news that brings. As Jerry and I talked about his upcoming appt. he told me that he "likes getting his heart pictures and he's used to it." He said "that doesn't hurt but I'm not used to the sticky things and I don't want to do that part." Too bad it's not a choice. He will come home with stickies for at least a 24 hour monitoring of his heart.

Thanks so much to all our friends for checking on us and writing comments and emails. It means a lot to know that you are out there for us.