Saturday, June 20, 2009

And she's back

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It's been a lovely Saturday here complete with sweet family time on a blanket at the farmers market and Simon has just gone down for his afternoon nap.

Jaime was shopping at Trader Joe's and Simon was just at the beginning of his feed. He and I were nestled comfortably in the rocker and it seemed like he was just about to close his eyes. He was playing with my fingers, touching the pads of his to the pads of mine. Playing gently with the pressure of digging a nail in versus just finger pad to finger pad. So frikkin' sweet.

I leaned over to smell his head, which I often do, appreciating that smell, and there it was.
A visceral memory of another time. Another time when I was smelling Simon's head where I remember thinking this might be the last time that I get to do that.

That first night in the hospital when Jaime and I would take turns holding him as we waited to see/understand what was going on. Holding him in our arms while hour after hour, his little heart and body became more and more exhausted. Holding him in my arms smelling his head while they wheeled us from admitting to the ICU. Breathing him in.

There I was in our bedroom with him after a lovely happy morning, nothing that different, smelling that same sweet Simon head smell.

And there she was. She was back. Standing right across the room from me. Death was back.

Not in a scary way. She was just there. Of course she'd been around all morning...I remembered that I had woken up from dreams that were all about death. Not scary ones but just crazy dreams that included Jack Black and a friend from the not so long ago but distant past that had died, showing up and dying again but in this very matter of fact- you just gotta be with me while it happens- kind of way.

So there she was. Looking a lot like Georgia O'Keefe but with long flowing grey hair and a kind of dusty rose summer dress on. She was barefoot and looking so sweetly at us that I couldn't help but feel kind of comforted.
I know it's weird but Jaime, Simon and I have a very special relationship with her and I think it's fitting that she come around every once in a while.

I am so aware of being in that cycle with Simon. And I believe it is a cycle. From just before that moment that you come into being (and you sweet reader, you get to decide when that moment is) until just after that moment of your last breath. I don't know really if you go back to that same place but it feels like a cycle to me. From before you were 'being' to after you're done 'being', at least this being that you are right now.

None of us know where we are on the ride, only that at some point it's going to come to an end. With cardiomyopathy and with Simon it just feels like we are called to think about it a little more than I normally would.

Sure, it's fun to pontificate on death occasionally. Over a dinner with close friends on a random night when the conversation runs it's crazy course. We've all had too much of some inebriating substance and gone down those crazy conversation roads right?

Being Simon's Mommy, travelling his road with him, having a close and regular relationship with death, it's just different.

So, she's back.
Well, actually she's gone right now. Just a short visit today. Fine by me.

Jaime's making strawberry ice cream. Had she stayed we might have offered her some... but in a to-go cup if you know what I mean.

Friday, June 19, 2009

Frodo Fitch-Jenett

Straight from the Shire...

One ring...err baby, to rule us all.

Oh yeah I almost forgot. His BNP was 494. Still going down. Right on Little Man, right on.

Wednesday, June 17, 2009

Stepping up in the world

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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 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?"