well, he's not really stepping yet but we are moving up.
We just had our monthly cardiology visit and as I suspected/feared/hoped for, Rosenfeld said that he's fine to see Simon every two months now.
Makes me a little nuts just thinking about it but I know we can call anytime and CHO is just 5 minutes away and all that. Still...
As for the visit itself, Simon is doing just fine. His Echo doesn't look that much different but the "that much" is actually his heart doing a little better.
During the last two visits HunkyPants had said that there was some concern with the left ventricle looking just a tad bigger and the shortening fraction had dropped just a hair. This visit showed that the left ventricle had gone down some and his SF was back to where it had been three visits ago and even a little stronger (from %18 to in the 18-20 range). Everything else looks good, but Simon looks "great, with great energy!"
We even got the go ahead to try out some homeopathy, Rosenfeld is going to look at some herbal recommendations and even try and get us a 2nd opinion phone consultation with the leading cardiomyopathy specialist in the world today (Dr Towbin). All in all I would say that it was a really good visit.
Yes, we had to do a blood draw (BNP on Friday if all goes according to plan) and it sucked but I have to say this little man has incredible bounceback. Simon has showing us over and over again that he has an uncanny ability to be present in the moment. He lets me (and the world) know when something really sucks for him and then when it's over, for the most part, so are his feelings about it. It will be interesting to include talking into that equation once the little man gets more verbal. I love the 'Fshhhh' sound we get in the waiting room as we stand by large fish tank.
I also love having a pediatric cardiologist that will 'ok' homeopathy where other doctors will poo poo it right off the bat. Rosenfeld also said that he would look into the four herbal remedies that were recommended to us to see if we can do more for the little man as he's so stable right now.
It's exciting to think about complementing his traditional medications that have a strong handle on keeping his symptoms in check with something that might even get to the underlying issue.
So, Simon's meds keep his blood pressure and heart rate in check but something homeopathic or herbal might touch on actually strengthening the heart muscle. What's nice is that we don't seem to have to actually give the former up to begin working with the latter.
I actually feel really hopeful about it. We have an appointment with a pediatric homeopath (a former MD no less) in late July. We had a great phone consultation today and I'm excited to work with him and have Rosenfeld talk with him as well.
Can I just say once again that I am so grateful to have a team (Rosenfeld, Gleghorn, Winokur) that are willing to try or at least support different modalities than the ones they were trained in. Thank you team.
Other than that we are chugging right along with the little man clearly understanding more and more, standing on his own for a few seconds here and there, two more new teeth (8 now total!), and crazy wonderful games and facial expressions throughout the day.
"Ech..look at me...I'm an old man...no I'm a baby....Nu? Laugh already....this is some of my best work"
"Hey, whose that good lookin' baby over there?"
"A little privacy please...?"
You saw this one coming didn't you?
"What? What could you say to me that I haven't already heard?"