Team Shimmy

Monday, September 20, 2010

A few days o' Shimmy

Simon gets a haircut

I think he looks like Biff from Back to the Future

Self Portrait 1

Self Portrait 2

Simon and Mama love

and last but not least...

These are all of the spices that Simon let me put on his tongue tonight.

thank you and goodnight.

Thursday, September 16, 2010

http://www.youtube.com/watch?v=V8pIaaQp7Y8
Pow!

I watched this video this morning. I had posted it to my facebook without even watching it and figured (as Simon and are getting ready to leave for 'school') that I should probably watch it.

It was like someone had taken a fist, and like you might bang it down on a table to make a point, struck me center in the chest.

The ominous music, the staggering stats, the awful prognosis...that's Simon. That's a truth of living with Cardiomyopathy.

It's not our day-to-day and doesn't at all speak to the oh-so-rich quality of life this boy has....not at all really. But... it is a truth we live with and sometimes it just comes to bite me in the ass.

So I watch it. And we're out the door a minute later.
I can feel the video still sitting like a lump. We arrive at school. We sing, we play, we have snack and Simon is completely oblivious to the fact that Mommy is on the edge of losing it.

I keep looking at him so happy and vibrant....with an estimated five-year survival rate of 40-50%.

My head is swimming. Finally it's parent group time and I can sit in a room with other parents that 'get it'.

And here comes the latest analogy from my days of being a white-water canoeist.

9:15- 11:00 The river that's been dammed up for about two hours is about to be released.

The river that's often running smooth with a good current and the occasional class 1 or 2 rapid has turned a bend and I find that I am all of a sudden part of a much larger waterway with a dam release scheduled where I wasn't expecting one. Where I can usually map out the route, noticing the large pillows and eddies where I might need to maneuver one way or the other, I all of a sudden feel the current pick up and am swept away at a speed which is both unchosen and dangerous. I want to slow down and go back to the mostly predictable paddling of before. I know there are holes and sweepers but I'm travelling at a pace that I'm comfortable with, in addition to having some spectacular scenery to delight in. The adrenaline is there for sure but there's very little chance of becoming overwhelmed.

That video makes me feel overwhelmed.

Simon lives with a serious heart condition. I can't ever forget that. Tube feedings and medications don't ever let that happen. But that's very different that being confronted with mortality rates. I felt like I couldn't catch my breath (ironic comment here) and that it was too much. Too much to think about, to much to live with, too much as a parent to have to hold the possibility of my child's death so frikkin' close all the time.

It was a good to cry, a good reopening of that room that I don't live in but always know is a part of my 'home'. A fitting way to start off the Holy of Holies. Tomorrow at sundown begins Yom Kippur. A time when I believe the veil between the material world and the spirit is thin. A fine time to feel raw and in touch with that which is larger than myself. I'll leave the door to that room open for right now; let in some air and light.

Hopefully on Sunday, I'll be able to close it again, and as the door shuts with a gentle click, I will pick up my paddle and continue on down the river.

Days of Awe

Last Wednesday night began the Rosh Hashana or the Jewish new year. It also marks what known as the Days of Awe. That time between the starting of the near year and the holy of holies, Yom Kippur. It's also known as the day of Atonement but I choose to mark it in other ways besides atoning. It is about marking a beginning with intention, purity, and grace. Looking both forward and back with clarity. Feeling rooted and leaving what needs to be left behind. It's less about sins and atonement as my rabbis would have had me believe.

Don't get me started.

The point is that here at the Fitch-Jenett household the Days of Awe actually started almost a week earlier and I am still trying to take it all in.

And I feel a little overwhelmed.

Numbers. Left ventricles. Reserves. Coming winters. Appointments or lack thereof. Cross country trips. High Holy Days. Services.

Simon seems to be doing so well. His cardiology visit was amazing and his BNP coming back so low. What does it all mean? Inquiring minds want to know.

Truth is....there are so many truths and some are easily understood and some remain complex and contradictory.

Simon's heart is getting stronger. His numbers and echo cardiogram tell us that. It's a great place to be right now and certainly as we head into another winter. It's also a great place to be given where we've come from (August 08' through November '08 posts attest to this) and it's a great place to be given where we think we're going- Simon will be turning 3 this year and aging out of his early intervention program. This means that we need to think about a regular pre-school for him.

It also doesn't mean anything. Nothing at all.

I can hear the brows furrowing and quiet "huh?"'s

Simon's heart is getting stronger AND it's a muscle that has been severely damaged. It may get back to working well enough but will remain a muscle that went through some significant trauma and may or may not be susceptible to future trauma in ways in which we cannot prepare for or identify. For example, there are kids that are on our cardiomyopathy listserve whose heart function was in the normal range for years. They were categorized as having "resolved" cardiomyopathy and then for whatever reason, their hearts began to "fail" again and even got to the point of needing transplants.

It just means that we don't ever get to say "he's cured" or "Whew, than goodness we're be done with that" or "glad that's over".

Nope (as Simon likes to say with a very pronounced 'p').

We will live with this disease for the rest of our lives. AND, we will celebrate the strengthening and thickening, pray for continued improvement, and give thanks for each day that we laugh and learn and live.
We will breathe through, cry out, shy away, risk take, stumble on, clean up, get messy, feel fear, be frustrated and continue on. With hope each year for G'mar chatima tova, that our names will be sealed in the book of life.

In the meantime, here are photos of Simon over the last few weeks, including his first trip to the Monterey Bay Aquarium. It was awesome.

Getting ready for the return to the Mother ship

I crack myself up

And then we headed south to the Monterey Bay Aquarium

"Oh my Gosh Fish!"- this is actually what he was saying over and over.

High five-ing

Touching Rays

Sea Cucumbers are slimy!

Starfish!

Jelly's are cool!

Cabooos!

Coral is colorful!

It is one of the greatest things when Simon says "Anemone"

"So I came out of a giant clam right?"

Mama Angelfish

Mamaw SeaHorse

SeaHorse

Mamaw says "ride em' cowboy"

Snoozing on a waterbed

Wednesday, September 1, 2010

112

I will write more later but all I can muster right now is 112.

That's what Simon's BNP is. It measures how distressed the heart muscle is. It was 3900 almost exactly two years ago. 100 and under is 'normal'.

Simon's is 112

can't stop smiling

Tuesday, August 31, 2010

Miracle Worker

Simon had an awesome cardiology visit yesterday. His shortening fraction is up to 25% from 21% on the last visit and now falls within 1% of what is considered a "mild decrease in function". Dr. Rosenfeld heard no gallops or problems and instead heard a strong, slow heartbeat. The echo showed that his left ventricle is slightly measurably smaller than last time (4.0 versus 4.3, not sure what the units are) which is great news as we want his ventricle to get more "toned" and less "flabby". Best of all, we don't have to go back for 6 whole months! We've gone from a schedule of a visit every week when he was first released to twice a year. I don't know that I ever thought we'd get to this point, honestly.

When Laura called me to tell me the great news about Simon's Cardiology visit, my first thought was:"You did this. This is the fruit of your work, Laura."

So here's a shout out to the woman who has nursed a little boy back from the brink with love and patience and time and sweat and tears. I'd venture to call her a miracleworker.

Your sacrifices of time and energy and basically everything that was "yours" are not in vain. Keeping on top of his feeding and making sure his meds happen on time and are the right dose, making sure he gets extra food if he barfs it up, taking him to his appointments, leaving social situations that you desperately want to stay in because there's a sick kid, wiping down the swings, practicing his words, talking to him non-stop, bringing food out to play with when it's time for a feed, driving him for naps when you think you might fall asleep at the wheel, reminding him "legs out", schlepping him to San Francisco for Feeding Therapy and Alameda for Speech Therapy and being home on time for OT and taking him to PIP twice a week and to Cardiology and GI and regular doctors appointments...

You have created the container he needed for his body to begin healing and nurtured the tender, weak spots left from his days in the ICU. He's not just physically healing, but he's catching up developmentally and it's 99% your doing.

This latest visit is the tangible proof of your work. There were doctors and nurses who thought we might never make it out of the hospital with a live child. But we did. And not only is that child alive, he is so HERE, so firmly on the Earth and so happy to be here that he stops people in his tracks with his light. You have been feeding his light for almost 2 years, Laura, and it's blindingly bright. I know you haven't done it completely alone, but you have done the lion's share.

I will never be able to express my gratitude for keeping our son alive and bringing him to the point he is at today. Our boy is thriving and it's because of you.
Thank you, Laura.

Your eternally grateful wife.

Wednesday, August 18, 2010

Listen to his Heart

I listened to Simon's heart last night for the first time in a while. It felt at once so strange to go and get the stethoscope, my cell phone (set on stopwatch) and stand over him like I used to do at least twice a day and then of course so dang familiar. I've done it more times than not in his 2+ years of life.

10:00 at night and it's a lovely and low 59 beats per minute. There's the usual irregular rhythm but so much less irregular than it used to be.
Such a familiar sound, and I thought "how many parents get to listen to their child's heart like this?" I do it now just because I can and because I want to remind myself of the steadiness. The steadiness of where we are in this moment, the steadiness of his strength, how he holds on to life now with almost an effortless firmness. And, he's got such a firm hold, he really does. It's all relative but in this world of heart failure and tube feedings and multiple medications and therapies, Simon Lev has his heart steadily beating (with the occasional skipped beat or 'thrown pvc').

I was about to write 'his feet firmly planted' but I couldn't because of an incident yesterday.

Jaime and I headed out with Simon and Roxie for a short loop around the neighborhood. As we came to the playground just before our turn around spot to head home, we saw a friend with her two kids and decided to stop and say Hi.

Simon clambers down from the Jaime's back and head over to the climbing structure. This is a spiders web like structure with thick rope and two levels to climb up (at least 20 feet high). Up until now, and for the last 6 months, Simon has stepped up on to the black ball at the base of the structure but not ventured up into the rope area. He has been content to stay there for 10-30 minutes at a time, enjoying the feel of being off the ground but really no higher than 10 inches at the most, watching other kids climb and trying out the various perspectives that the four different bases offer.

And he's off. I'm not paying attention thinking that today is no different than other days (Silly Mommy) talking to Mary Beth as Jaime trails after Simon when I hear "um...Laura?"

I look over and there he is, climbing the rope web. He's about three feet off the ground with Jaime spotting him from behind.

And he keeps going.

And going.

Within minutes he has reached the top, at least 20 feet off the ground, and about to touch the very top of this climbing structure jabbering "very top, very top."

Mary Beth and I are laughing speechless and Jaime is struggling to keep up with him.

This is the boy that was ready to walk months before he actually did (and then took off down a long hallway), would only say Hi and Fsssshhhhh and now won't stop jabbering on ("we love each other very much" is his latest- 6 word sentence!!), and wouldn't risk more than one step up from being firmly planted on the ground (or run or jump- which he still won't do.)

He was climbing like a pro, planning steps up and down, and showing no fear at being so high.

I love him. I love his risk taking. I love how he moves with intention. I love how he lives with fear and courage in the same breath.

Amazingly the same has been true with his eating lately. He has let me put shallow spoonfuls of miso in his mouth. He has been working on sucking different things (beef jerky and edamame dipped in soup). I almost wanted to cry the other day when he let me spoon feed him 3 or 4 times. It felt like I was getting to do something that most parents take for granted- feed your child (sans pump and tubing). It was awesome (another one of his favorite words).

I missed out on that. Even getting to do it 4 times in 10 minutes was this incredible feeling of reclamation; reclaiming some of that innocence, those simple pleasures, traditional parenting that Jaime and I are missing so much of. And yet not missing that much of. Watching your kid climb all the way up that play structure for the first time- hoping that they don't fall and wondering how much to support or simply 'spot' them... that feels pretty typical. Pretty awesome. Pretty awesomely typical.

Yeah.

In other news Simon has now graduated to twice yearly GI visits (Holy Cow!!!) and is, in the words of Dr Gleghorn, "simply perfect." He's finally on the growth chart for height (3% but on it at least) and even with a little weight loss, we are still on track. I will work hard on not having body dismorphia for my son- given that fattening him up was my main goal in life for so long- and trust that he is just fine. Or, I could just join Dr G in her assessment that he is in fact "simply perfect".

I totally agree.

Totally.

Look at him.