Tuesday, May 19, 2009

No News is..no news (& good)

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We had our regular monthly Cardio visit yesterday (always makes me think of cardio as in exercise- Jane Fonda anyone?) and well...there's absolutely no change. That's a good thing, right?

I had to remember that we're running the super iron man marathon and while even though a month feels like a million miles ran, we have so much longer to go and there won't be changes that we'll be able to see for months maybe even years at a time.

Pace yourself Laura.
Pace yourself.

That doesn't mean that I didn't have a little fantasy daydream while we were post Echo but pre HunkyPants visit.

There Simon and I were. Waiting for Rosenfeld to come in and tell us the results of the Echo Simon sat (beautifully) through. It was taking a little bit longer than usual and I saw him walk by our room a couple of times giving me the one finger "one second" motion.

In my fantasy he was going around trying to corral Patel, Casey, and Newkhumet so that they all could be there to share the news that Simon's function had drastically improved this time.

It was such a nice fantasy.

Not this time.

Everything's the same. Exactly the same. Simon's still in heart failure. No increase in function but no decrease either.
He's gained weight really well and once again we just had it confirmed, "look at the boy not the numbers".

Well, when you look at the boy he looks pretty damn good. Incredible in fact. His eyes sparkle. His smile reveals a sparkly set of teeth (we're at 6 now!). His cheeks are round and pink like his mommy's. He'll pull himself up on just about anything. He's lookin' gooooood.

Still, it's a nice fantasy to hold on to.

It's not like I was crushed that it didn't happen. I just felt like "ok, it's not this visit. Probably not even the next. But, some visit...." I can really see it going down like that. Made me feel good.

Also, we got another month's reprieve from lab tests. Sorry folks, that means no BNP this month.

Rosenfeld asked if I was ok not doing them again this month since really he would only be testing for the INR (tests the effectiveness of blood thinning meds- in this case his Cumiden) and he's not that worried about it so would every three months be ok?

Hmmm. Getting the BNP # or not having to hold Simon down for a blood draw?

Guess how long it took me to choose.

So for those of you hankering for a # to focus on...how 'bout one of these:

The number of ICU Dr's and nurses that came out to see Simon right away when they heard he was visiting after his clinic appointment.

The number of times I needed to change his clothes today from almost no throwing up.

How much the little porker weights (twenty two pounds 5.7 ounces)

How many nights in a row that he's slept 9+ hours straight without waking up at all (Alhamdulillah!!!)

Roll of toilet paper that Simon learned to unravel during a brief solo excursion to the bathroom.

Yes, that boy can crawl rather fast now. Either that or I think he's mastered the science of instant teleport. Either way I think he's amazing.

Know what else is amazing?.... The continued support and love. I don't think I'll ever be able to express what it's meant to all of us.

Thank you. Thank you. Thank you.