Birthday celebrations

Too tired to write. So much celebrating.

Heeey, welcome to my birthday party

Cake!

Getting ready to wear my new suit- Tom Cruise ain't got nothing on me

I like the disheveled look

But I'm more of a classic guy

Aaaw yeah

This is my real 'suit' though- Super Simon!!!

I got loads of birthday love for my Auntie Dre

And I have loads of love for you...just for you

I call that one my Hippie Magnum look.

Beginning

Today was the beginning. Today was the beginning of my time as a mother................. This is not the birthday blog entry that I want to write. But here I am, sobbing my frickin eyes out because today was the beginning that never got finished.


Hindsight blah blah, probably born with it, blah blah blah, whatever.

Today I gave birth to Simon Lev and he was my baby boy.  Born without complications, born at home, breastfeeding well, sleeping right next to me, my little healthy baby boy.

Today was the beginning of a three month, 21 day, odyssey that ended abruptly. I sound so fucking fatalistic right now but I gotta tell you, the tears running and uncontrollable sobbing tell me that I am grieving something really big right now.

I wish that I could tell that two year younger me some things. I wish that I could tell her/me that things are amazing right now but you have no idea what's coming. I thought I had some range in thinking about all the things I didn't/couldn't know as a new mom.

Yeah right.

I miss that two year younger me though. The one that thought I'd have gone back to work part time. The one that imagined picking up Simon from the special-just-right day care that we found for him. The one that was excited about teaching him to eat, not missing out on other kids birthdays for fear of germs, spending too much time looking on the internet for a 'cooling vest' so that we could make our way through a Bay Area summer without having to leave/ stay inside/ deal with temperature sensitivity. I miss that me.

Two years ago today was the beginning of that new mommy excitement. Granted I was totally exhausted, my body feeling just like and totally different from that time that I did get run over by a truck. Jaime and I were in shock. We'd done it. Two months of trying and 41 weeks later and here we were. A threesome.

So what that for the next three months 21 days were we dealing with what we thought was a kinda fussy baby?

He was smiling. He was laughing. He was our fussy baby.

Today is the beginning of that time when there were no syringes, no medications, no echo's, no blood draws, no hospital stays, no infections, no feeding tube, no PT, OT, early intervention program, no barfing, no shortening or ejection fractions, no waiting to see if you were going to live or not Simon Lev.

I was just your mom. I miss that. I miss just being your mom. I miss that me. She's gone and I don't think that she ever gets to come back.

It's not that I would trade a single moment of my time with you over the last two years. Any of it. All of it. Those first 3 weeks 21 days and then the next 20 months and 7 days.
All of it makes me the mom that I am today and I really like this person I've become (mostly. I think I could take better care of myself sometimes). And I really really like the person that you've become Simon. You are exceptional. The way that you greet your world.
"Hi! Hi! Hi!"

The way that you are so clearly in your body and in touch with the world around you. You are present for each moment. You may not eat or drink just yet but you certainly drink in life.

So why am I still crying? How ironic to be feeling such a profound feeling of loss on a day two years ago when I was given such an incredible gift. You are such an incredible gift to me Simon Lev and so much not the gift that I thought I was getting.

So I'm sending lots and lots of love to that Jaime and Laura of two years ago (just starting contractions right about now).

The space time continuum is really thin and I feel the discord between what that me was feeling, with what's real right now. It's a Grand Canyon scale chasm. It's filled with a million and one experiences that those new parents of two years ago can't even imagine. They can't even imagine the range of experiences that are coming their way, let alone the experiences themselves.

Each one an incredible patch of road. Some rough ones, some smooth, some clouded, some with incredible vistas.

Here we are at two. The me of two years younger is so excited to share ice cream cake with Shimmy La tonight. The me of today is feeling so blessed to be here at all.

Happy Birthday Simon Lev

Gooood Morning Birthday Boy

Family Bed

Post Birthday Strawberry

Omission

I can't believe that I forgot to include last weekend's kick-off activity. This was at Shabbat dinner at our dear dear friends Justyn, Kim, and Amira's house Friday evening.

http://www.youtube.com/watch?v=rT7H87AdF30

Please note the Pinafore AND board short combo. It's a look, riiight?

Our Weekend in Pictures

We begin with an early drive down to Oakland's Chinatown for some Dim Sum (w/ Anne, Eric & Jonah)

Later on in the park Simon and Manav decided to play 'train'. Manav is not so sure about Simon driving.

Later on there was Dinner with Moses D and...

After dinner Simon was feeling like it was time for....

some beads and a little invoking of....

some good ole' time religion. "say Halleluja will you!!?"

Spreadin' the love

"Yes, I thought that was a service worthy of opening my shirt button,

I really spread the word with that one."

And finally, after at least 2 weeks of not napping....Blessed be.

Mystery Solved

Bilateral ear infections. That has been the culprit plaguing our sweet boy for the last few weeks. Such a simple, simple thing that has caused quite a few moments of terror. Laura took Simon to the pediatrician today (I keep wanting to say the Vet!) who took one look in his ears and decreed, "Yup, that one's infected. Yup, that one too". Oh, and he had nasty, nasty slime coming out of both eyes. It was quite lovely, really.
This may not be all of what has been making him sick, but it's likely what was causing the cough, runny nose, sore throat and fever. So, let's raise a glass to Amoxicillin, shall we and cross our fingers?

Interestingly, he showed no indication of any discomfort in his ears. I theorize that his reference point for pain is so off the charts that he doesn't even really register such a "minor" thing. I mean, when you've had a tube pulled out of your chest with just a little Versed, what's a little earache? Who knows, but that's my latest pop psychology.
Laura and her Mom reminisced about the chronic earaches/infections she had growing up (as did I). She hopes she's passing on some other things to him besides this nugget. Actually, two docs from the hospital saw Laura and Simon out together today and one of them said "I'm kind of freaked out right now about how much you guys look alike". So, he gets his good looks and his infection prone ears from her. Everyone's got to compromise, right?

All said, though, how typically toddler is it to get an ear infection? I'm a little shocked it's his first one. AND, it just reminds me that our margin is so thin. I think we almost had to take him to the ER because of an ear infection a few weeks ago. That's insane to me.

Laura just told me that the pediatrician today affirmed her for what we're doing with him. She said that we're doing an amazing job, both with the typical care and the non-typical care. She appreciated the ways we provide him with everything we can- from making sure that he gets as normal an experience as possible to keeping him as safe and healthy as we can. She remarked, "He's just thriving because of what you're doing".

I got tears in my eyes when Laura told me that. I often take it for granted- I can't imagine doing anything less for him. I was just telling Laura last night how totally in love with him I am. It's taken a while to get there (I likened having a newborn to an arranged marriage. "Um, nice to meet you...so, we're going to be together...forever?") but I love that boy more than I thought possible. And I think we're just getting started.

I'm so glad that Laura got seen for all that she does. And, yes, yes, Laura reminded me, for all that "we" do. I just feel like I do such a small fraction of what is needed to care for him. I know, I go to work every day and bring home a paycheck, but it feels easy by comparison in some ways.

I have hard days at work (I worked until 11 pm last night) but I get to flex my time and things are predictable for the most part. Laura has days when she gets NO breaks, when Simon doesn't nap, when I'm working late and he's puking and crying and she doesn't get to see another soul for a whole day. I can always go to the bathroom at work and take an extra 5 minutes and play a game of solitare on my iPod. She doesn't always have that option.

Yes, we're equals AND she's my hero. We are keeping him alive and thriving together, but she's the ox pulling the heavy load most of the time. I do love my little Taurus...

A little bleary eyed and still chipper. Miracle boy

Spoke too soon

That part of the last post when I talked about how well Simon is moving through his colds, this last one in particular...


Just kidding.


We're back to watching closely and calling Dr's.


He's got another fever and spent most of the day going back and forth between riding a medication high (mostly homeopathy which is great) and scraping the bottom of the barrel with sweats and pukes and truly pathetic break-your-heart moaning.


We are three weeks into solid illness and while each bug is clearly different from the rest, we seem to be getting more and more into scarier symptoms. Mostly I'm just talking about fevers.


Now for most folk, young and old, a fever can be a great sign that the body is doing what it needs to for recovery. We learned today that every degree over normal body temp requires the heart to work 10% harder. Well, for someone who's heart is functioning at at-least a third less than yours or mine...when he has a fever of 101.7....that math is beyond me since I haven't taken math since my sophomore year in high school- but it's not good. It does not fill me with assurance that he will be fine. It makes me hold my breath sometimes during the night so that I can hear whether he's grunting in his sleep signaling that the fever is back.


This sucks. He's holding his own for sure but that line feels gossamer thin and I hate feeling that way again, regularly.


Guess what else I hate....the change in schedule. Or more clearly the loss of schedule. I know Simon is managing for the most part with our hanging at home (bless the Teletubbies, bless them big) but for me it's a little bit of a snowball effect where one missed 'school' day is ok, but to go three weeks without my parent support group, hurts. No swimming, no 'school', makes Laura a dull girl. Actually the opposite really. I feel really sharp, kind of on edge. A little crispy round the edges. Like when bacon has been cooked too long and it's that kind of sharp that cuts the top of your mouth when you eat it.


Sigh.


At least the sun is out. I am so ready for cold and flu season to be over. So ready.

Another week sequestered in the house was threatening to turn me into a babbling idiot.


Speaking of babbling, Simon's fave new activity is trolling for hi-partners. While walking or strolling down the street he will choose a target (usually the person walking towards or along side of us) and being to chant "hi, hi, hi" until they make eye contact and return the greeting. His intention is so obvious it's hilarious. If he doesn't get a response he will take 10 seconds to stare ("why are you not focused on me?") and move on to find another more willing target. It's quite amusing.


So there it is, a bacon analogy and a funny story about Simon. What else could you ask for in a blog post.

Walk down that road

We are two weeks into continuous colds but I'm hoping that we're going to get a break as Simon seems to be kicking this last one pretty fast. It's been a couple of weeks of rain and isolation and no napping so....please let there be some light (daylight savings pun intended) at the end of the tunnel.

The scare last week of Simon spiking a fever and just lying around groaning was a painful reminder of that fear that I've mostly put away. That worry of "is this the cold that might send us back to the hospital?" Yeah that one. After at least a half dozen colds that Simon sailed right through, certainly with some choppy waters but no capsizing, I had neatly tucked that terror away in a drawer and covered it with sweaters that I almost never wear.

Then, he was looking like he just felt terrible. Normally he compensates beautifully even though we can hear the congestion and/or coughing. All of a sudden he wasn't compensating AND he was coughing and snuffling. Then he spiked a fever. He spiked a fever of 101.2 while he was on a combination of Tylenol and Motrin and was wheezing again.

And so the calling began. Within 40 minutes we had talked to the pediatrician on call at his regular Dr's practice, the cardiologist on call at the hospital, his regular pediatrician (who just called to check in after the on-call Dr had called her), and Jaime and I conferencing about whether or not to just bring him in.

Amazingly, in that time his fever broke and his breathing slowed some. It was all too familiar.

Once again though, Simon manages to pull it out in the final minutes before the bell rings.

We've still been battling congestion and some wicked coughing but his heart rate and energy are more than holding their own.....working with so much less that you or me!!

Oh yeah, and some where between that and the current moment he started walking and hasn't really stopped. Life is alternately picked up it's pace and slowed itself down exponentially.

While it took us over 20 minutes to walk the block and a half to the Farmer's Market this morning (Simon has not yet mastered the 'shortest distance between two points' thing) it also means that I pick up my pace a million times a day making sure that he's not walking into the street, on to our neighbor's porch, into that open car door, in the opposite direction that we're trying to go, picking up cigarette butts from the sidewalk, and in general putting himself into mortal danger.

I'm a little tired.

That's all I got for now. Well, that and some stinkin' cute pictures.

Enjoy.

Heeeeeyy, how you doin'!

Aaaargh matey!

Check out my Cher impersonation

I just put my swim trunks on my head while Mom was in the other room. She doesn't quite know what to say about this.

I can just use my eyes as flashlights if there's ever a blackout.

Soooo bright you'd never know I'm on day 12 of numerous colds

Check it

I have so much to write about the last week and a half. Hard times, fevers, hospitals, no hospitals, no sleep, no naps, rain, steroids, blah blah blah.

And yet, I can't think of a damn thing to say.

Life as we know it is over.

http://www.youtube.com/watch?v=NSUOyChSOFM

Hack

Tonight's meds regiment.

A fever and chest infection mean 'round the clock Tylenol and Motrin. Any one wanting to volunteer for the 2:30 and 3:30am doses? We are taking names.

This does not include the waking hour administration of albuterol through a fun breathing apparatus.

Who's life is this?

Mine. All mine.

Very tired.

Take It All

I would.

Yesterday Simon was feeling more than just a little punky. He's got another wicked chest cold and a terrible cough that makes him gag that much more than usual. It's a get-purple-in-the-face, make your eyes water kind of gag.

After I was sitting next to him post gag I said, "Simon, I am so sorry that this is happening" and then surprised myself by adding "and I would do it all for you if I could. All of it Simon, I would take all of it and do it all for you. I would take the coughing, I would take the medications, I would take all of the blood draws and Echos, and I would most certainly take the disease. I would take it in an instant and go through it so you didn't have to."

I was such an interesting road to go down. Without question I would do all those things. And in the same instant I had the thought, the kind of fucked up thought that only comes with our very fucked up situation "but all of this is what makes Simon who he is, and I love who he is. He may only be 25 pounds, -30 inches, and 22.5 months of Simon but every single pound, inch, and moment of those 22.5 months is just perfect and loved and held in awe in a way that I couldn't fathom 22.5 months ago."

I'd still take it all. In a heartbeat (there are those goddamn 'heart' phrases again)

We haven't really left the house since Tuesday morning except a sweet little jaunt down Lakeshore with Auntie Dre.

Simon's communication is taking off. We were lying on the bed and playing with the phone. I asked him if he wanted to call some one. Did he want to call MM or PopPop, G'paw or Grandma, Auntie Jen or uncle Frank?

Clear as day he said "Dee" which is his name for Auntie Dre. It was amazing that he had his own process just then and while I was spouting names, he came up with one that was completely his own.

Simon is having his own thoughts. It's one thing to be able to choose from two choices offered to you. It's another to come up with a choice that's completely your own.

I'm sure we're in trouble from now on.


Last night was rough. I think Simon and I got maybe two hours of sleep total. Jaime (bless her, jealous of her), when it's not her night to be 'on' can sleep through the coughing and crying.
In the wee hours his breathing changed and there was clearly some 'pulling' and wheezing going on as he tried to catch his breath.

I know things are worst in the early morning but my mind started racing down that road of "we need to go back to the Dr and maybe even the cardiologist today. I don't want to get admitted. I really don't. What if this is the time we get admitted and his heart is getting worse and we have to go back on IV meds. We've spent 15 blessed months out of the hospital. I don't want to go back. I don't want those days again. Kids from our listserve go in and out of the hospital all the time. It's been so amazing to not have to. I don't want to. I wonder if Carol would be on when we got admitted." Zip zoom vrrrrrooooooooooooooom.
It's amazing how fast that thinking goes. Ferrari's got nothing on me.

He's mellowed some in the last hour. Breathing calming down. He actually seems to be resting peacefully.

Tuesday morning he slept from 8am to 11am and then didn't nap in the afternoon. Rough day but I'll totally take it over the other option laid out above.
Totally

I'll take it.

Pace & Perspective

Simon is on the move. And we're so far behind that it sometimes feels like a million pound ball attached to my heart/ankle.

He's so amazing! He's walking!

Not on his own but he's walking for 1-2 city blocks at a time!! He'll hold on to just one finger or walk at an exciting clip down the sidewalk pushing his walker. For a hundred feet or more!

He won't take more than two to five steps on his own.
He's an interesting little man.

Our Infant Development Specialist from 'school' came by the other day for an in-home assessment and gave me a copy of the report to check out when she was done.
Like always, it's hard to see things quantified on paper. It's so much easier to look at the little man himself. I will say though that it's harder to watch him around his peers but easier than seeing it paper.

To recap:
Easiest to just be in the moment with Simon.
Harder to be in comparison
Hardest to have Simon quantified in a formal report in ink on paper.

There are some great life lesson type metaphors to be made but I'm just a little too tired right now (yes, I went to Bikram Yoga yesterday, got my ass kicked, and will do it again tomorrow).

As it stands Simon falls somewhere in the 10-13 month old range in certain things, 11.5-13 month range in other, and even the 18-21 month range in yet other developmental categories.

He's 22 and half months old.

It's really hard to have perspective around all this and so much of me just wants to trust in the love and support (and toys and games and challenges and language-except for the terribly inappropriate phrases) that I am giving him.
How evolved would I be if I could just let all of the fears and disappointments and need to go go go with the "right" development for Simon?

Super evolved.
I am not.

And yet, I feel most at peace and joy-full when I am not thinking about those things and simply enjoying swimming or going to 'school' or reading before nap time. I love those moments.

We are having good days and that's what matters.

Right?

Still... reports and numbers come into the room. They sit quietly but wear bright colors so you can't miss them. Sometimes they place themselves right in the middle of the room so that no matter where you move you bump up against them. It's not a harsh bump, not like scraping up against sandpaper or anything. More like a solid person with slippery cold clothing on. Enough to make you remember a different context/environment.

Simon's room is fun and warm and filled with softness and smiles ('show all your teeth' laughter even).

Reports and Numbers are not part of that. They feel different so you know when they're in the room.

I'm fine while they're here and....really appreciate it when they've left the room (but not the building)

Simon sets the pace. I try to have some perspective.

Then again, I think that sometimes no perspective at all is best and it's just about being in the moment.

F-ing hard.

And great.

But really, F-ing hard. (said with a smile)

The best climbing structures are made out of Grandma material
"Who dressed me?! For reals, who dressed me?!"

A boy walks with his Mommy

(please note the matching jeans and sweater vest style)

He makes a nice looking Bubbie

Not bad in jock-mode either

Muchas smoochas.

LF

All's well

All appears to be well in the Fitch-Jenett household.  Laura is off at a tattoo appointment, the baby is sleeping and I've been wreaking havoc in the kitchen.  

This past week was a little dramatic but it was all run-of-the-mill, normal life stuff and it just felt like nothing.  Monday I fell on our walkway while holding Simon.  He slept through the whole thing and I didn't get hurt, just a little sore.  Tuesday morning we had a weird, homophobic incident while getting coffee all together before I went to work. Then Wednesday morning while I was driving to work, I hit a sinkhole on the interstate, blew out my tire and had to cross 5 lanes of rush hour traffic to get to the shoulder.  

They all definitely rattled my nerves, but, honestly, it barely made a mark on my week, other than giving me good water cooler stories at work. I'm not sure if it's a perspective borne of experiencing true terror and drama, or if it's how I'd handle things  5 years ago, but it was nice not to have my week ruined by icky things. 

I was thinking about marriage the other day and came up with a somewhat horrible, but kind of good analogy.  I told Laura I thought being married was a little like being in a boxing ring.  You're in a contained space, with clear boundaries, but the edges are flexible and you can push on them and push off them and work your stuff out in there, knowing that you're going to stay in the ring.  If you take out the violent boxing stuff, it kind of works, right?  We decided to change it to a WWF wrestling ring and then Laura suggested Cage Fighting.  We had a good giggle thinking about us working out typical married struggles with crazy costumes, masks and stage names.  I'm not sure what our names would be...any suggestions?

Simon has been walking like a maniac (albeit assisted).  He mostly prefers to walk now, holding a finger or one of his walkers.  He still sort of walks like Frankenstein, but he's starting to bend his knees and walk like a human a little more. 

Here are some recent pics:

Simon, walking with his newly Domestically Partnered Godmamas

Looking happy as can be:

Normal

I'm normal.

(or at least 'normal-ish' according to my dear old friend Maia).

But let me go back and begin chronologically.

It's Friday morning and I head into the Cardiac Unit at Alta Bates for my very first Echocardiogram or ECG as I'll be referring to it from now on.

It's not really my first ECG since I've been through several dozen with Simon but it's the first one performed on me.

I didn't realize it, but in the days leading up to it I was starting to feel like this was in fact a very big deal, and maybe I should be spending a little time with myself and my feelings to work it out.

Laura time-Introspection- Focus on Self/Care: All things I've been stellar at in the last year.

The middle one maybe, but the first and last, I say I get a D-

The amazing thing was that I had my Mommy with me. She even came into the room with me and chatted up the ECG tech. I can't tell you all how amazing it was to have my mom here for the last week. To have someone focus on me the way that I focus on Simon.....priceless. That she held me down the same way that I have to hold Simon down...I thought that was a little much....Just kidding.

What was so amazing was that I could actually see a difference right off the bat, with my untrained, non-medicalized eye. My valve moves differently that Simon's. Mine is more like one of those doors that you might see on a traditional Berkeley craftsmen house swinging wide, almost 90 degrees with every pump. Simon's is more like a hotel room door with the chain attached so you can see who's knocking. Not quite that bad but close.

It was very intense to see.

I also learned that my ejection fraction is 62 where Simon's is 45. Mine is right in the middle of the normal range of 55-70. The tech was impressed that his was 45 and I took that wholeheartedly as a wonderful objective observation from someone that's seen a lot of hearts.

So while I wasn't getting the official "your heart is fine" from my doc I was at least comforted that I wasn't showing any obvious signs of Cardiomyopathy.

Today I got that confirmation. A sweet typed letter from my doctor that lists all the possible tests results one can possibly have. There were spots for Anemia, white blood cell count, lipids, thyroid level, glucose, kidney, liver function, prostate cancer marker, and a couple of lines left blank for OTHER.

That's where in small handwritten unreadable doctor script, was my procedure- "Echo" - and my very own (and possible first time ever applied to me) personal results " : Normal"

That's me right? Riiiight.

Gotta love it.

Shortly after my Echo, we picked up my sister from the airport, mother and daughters shared a delish lunch from my favorite Vietnamese restaurant and by 4:00, Jen and I were on the road for my weekend away.

I have to say I think that I did a great job. I only called home 2x a day and I cried only once...which leads me to my next story.

It's Saturday morning. Jen and I have had a yummy breakfast at our lovely resort up in the Russian River area. I'm just starting to feel present and even looking forward to my massage that my sister has scheduled for us.

We walk into the room, meet our massage therapists, get changed/naked and lie down on the tables. Immediately I feel my chest tighten and the tears start.

Who am I to be here and getting a massage? Why do I deserve to be here and be sooo taken care of? My son is at home with heart failure and tube feedings and I'm getting a massage?! This is too much.

We introduce ourselves and mention where we are each from. Jen from L.A. and me from Oakland.

I let my massage therapist know that it's my first time away from my 22 month old son.

(I'm going to write in conversation mode because I remember it word for word)

She says she understands because her oldest just "flew the coop."

Me: "Simon's a special boy, he's got a heart condition."

She: "Oh I'm sorry, I understand. My youngest has a serious chronic illness"

I might cry" I say, already there

Jen: "It's ok Laura, just be here."

Me: Deep breath, some good sobbing, and we get started.

Less than 10 seconds later she says "Do you go to Oakland Children's Hospital?"

"Yup," I say already wondering where this is going.

She: "We went there a couple of times..oh, we had the most good looking Dr. What was his name? We used to call him Dr Easy-on-the-eyes. What was his name?"

Me: "You're not talking about Dr. Rosenfeld are you?"

She: "Yes! That's him!"

Me: "Oh my fucking god. That's Simon's Cardiologist. We call him Dr. HunkyPants."

We went on to talk about him and how soap opera good looking he is (see August 6th 2008 entry) and then talked about our kids and the whole 'parenting plus' experience. It was amazing. Here I was, on my weekend away, at a mostly empty resort in Guerneville CA, and my massage therapist and I have the same pediatric cardiologist for our kids and not only that, we have very similar nicknames for him.

It was just perfect. It was just what I needed to relax and get one of the best massages of my life. I didn't have to pretend anything. I didn't have to tamp any parts of myself down. I didn't have to feel alone in that moment. (I know my sister and another massage therapist were in the room but still...). It was amazing. Jen said it was amazing how surrounded by Angels I am and it's true. There are incredible gifts to be found everywhere. Thank you Krissi.

We ended up having a fabulous rest of the weekend complete with a bad movie, a great walk in the redwoods, fun outlet mall shopping, and splendid sweet sweet time with my sister (with whom I haven't had that much time alone with in ten years- Thank you Fenny Jitch)

It was great to have had such delightful weekend because Monday was one of Simon's Cardiology visits and I was not looking forward to this one as it included his dreaded Echo plus the ever enjoyable blood draw. No matter how much I try and normalize the visit, the days leading up to it I feel my muscles tighten and the weight of everything settle deep into my core.

Will this be the one? Will it be the one where there's big change? Will his heart have gotten better? Will it have gotten worse? Will his tests come back with some anomaly or some cause for great concern? It's been so long since his last visit, what if something has changed and it's serious? Would they admit us right away even though he doesn't seem that different? Has he gained any weight? How much? Is it too little? What's his left ventricle looking like?

And on and on. I can't help it. It's a three to four hour event and it carries with it such weight, not to mention the holding down of my son accompanied by the screaming that is inevitable (for at least another several years with the blood draws- they say with the 'no owie' Echo, getting to three is the magical number).

We managed to get through the Echo with just a hair less struggle. I frikkin' love the Teletubbies and portable DVD players, and then we headed into the exam room to wait for Dr Easy-on-the-eyes.................I mean HunkyPants.................I mean Rosenfeld.

Three things. One neutral (or relatively positive), one delightful, and one terrifying and great all at the same time.

One Neutral- There is no change in his function (Shortening Fraction 20 Ejection Fraction 45)which I guess is better than the other option. I still always hold out for that big jump but we're 6 months now with no change. I wonder if Simon's plateaued. I'll keep holding out for the jumping.

One Delightful- Rosenfeld said that he didn’t need a blood draw this visit unless of course I wanted to know the BNP. It took me about one one hundredth of a second to say no thank you- sorry Liz.

And last but certainly not least

One Terrifying and Amazing- We are now extending our visits from every two months to every three months.

This is both amazing and frightening right?

I’m so very glad to have the longer break between Echo’s, blood draws, and the long-ass appointments that seem to fill up the entire day. I can trust that Rosenfeld knows how well Simon is doing in ways that I don’t, and of course it’s terrifying to think that Simon’s going to go three months without an echo or seeing a cardiologically trained individual (besides myself that is- I think I made up a new word there J).

I remember when we went from 1 week appointments to 2 week appointments and I thought I would faint.

Of course as we were arriving for our appointment I heard HunkyPants say goodbye to another one of his patients with a “See you in a year” and I thought “Gosh, someday I hope that’s us”

Such a roller coaster ride.

Sometimes I feel like I’m riding in the first car, other times the middle, and occasionally the rear.

In that first car I can sometimes see what’s coming and it’s exciting (Getting those better #’s, clear improvements, discharge days, finally hitting some milestones, Simon's laughter).

In the middle car I’m keepin’ on to keep on. (Making sure the meds are reordered on time, keeping appointments straight, doing regular daily activities, tube feedings, meds, Purell).

And then there’s that last car where the ride just feels more intense. Every whip turn, every drop, the very slow climbs, feeling like the floor just fell out from underneath you and you can’t catch your breath.

We haven’t been in that last car for a while now and I’m so grateful. Of course I always feel like I’m aware that last car is still there and attached.

Quite a ride.

All in all a good visit.

We're getting back into a regular schedule with swimming and schooling and walking. Did I not mention that the little man is WALKING!! That's right. Mostly with his crocodile walker (for oh...an entire city block) but we're seeing more and more solo steppin'. Twice now he's walked from our front door up to the front lawn holding my two (sometimes just one) hand.

Go Little Man Go!

Some photos from Auntie Joan's B-day dinner.

Simon enjoying drinks at Auntie Joan's B-day Dinner

"What do you mean I'm cut off? What kind of joint is this?"

"Wait, I'm serious. Really, I'd like another drink. I'll behave."

"It's ok. It was just water. Now can I have another drink?"