Monday, January 4, 2010


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If you missed it, read the last post first... Then the pictures will make more sense.

First day of vacation, walking to the beach.

A Boy, his dog, and the hole they've dug together

Naked time. Note the strategic draping of the towel (and the socks)

A boy and his Grandpa Eddie

Simon begins his love affair with pig


Simon continues his love affair with pig (in a different form)

Moving on to Gai Lan (Chinese Brocolli)

And completing his journey with (from left to right) a sesame ball, egg custard (on his face) and BBQ pork.

Then there was the late night snack of bread and soup topped off with yogurt and leftover sesame ball.
The boy was on a major tear

FYI this was all on one day!

Sunday, January 3, 2010

'Roid Rage and Righteousness

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I don't even know where to start.

2009 finished with a kick in the pants and 2010 started with steroids.

Let me explain.

On the eve of the holiday Christmas, Jaime, Simon and I head up to Gualala where Mamaw Dianne keeps a lovely cabin just east of Highway 1. It's right over the Mendocino county line and is, on a good day, a three hour drive from Oakland. Dianne, Ed, and Roxie's uncle-dog Barron are already waiting for us up there.

We leave just before 7 p.m. on a no-nap day and Simon is fast asleep in his car seat before we've cleared the Alameda county line. It's a simple drive up with Roxie whining for only a few minutes until her Dramamine sleep starts and Jaime and I enjoy some adult conversation until we arrive (less than!) three hours later.

A quiet night and the next morning we begin to settle in for the Silent Night. The tree is decorated with care. The dogs are run stoopid on the beach and Simon is happy as an abalone clam (they're prolific up there).

It's a lovely Christmas Holiday complete with roast beast, a successful attempt at Yorkshire pudding, and lovely simple present giving and receiving. Simon is doing well on a blenderized diet during the day and seems to have acclimated well to the ocean air and different sleeping arrangements.

On the third night, as we're settling down to sleep Simon begins to cough. It only happens once, a short fit of coughing that doesn't seem to bother him or even slow him from his slide into deep slumber.'s a different kind of cough.

Jaime and I both noted that this was a cough that we hadn't heard before. It was deep and wet. Not so great.

The next day was fine and Simon seemed in fine spirits. We played, we went to the beach, we even had some fun with food.

That night the coughing returned only this time it was most of the night. Every two hours at least he would wake up and move between retching and this hacking cough. The next day he was pretty tired and incredibly snuggly all day. Another night of waking and retching and coughing and we were starting to talk about it. Mostly in the sense of how the nights were getting to be a total drag but how well he was managing during the days.

By Wednesday we were all feeling a little worse for wear but Simon was still having great days with what seemed like normal "I had a rough night" tiredness but lots and lots of other moments of "I'm having a great time".

Quick Aside:
When I say great time I mean great time.
The cabin has berber carpeting in the living room area and it's nice and soft and thick. There's also a wood burning stove that when it's running, gets things quite cozy.

The latter was starting to be a problem for Simon until we realized that this was the perfect time to just strip him down and let him roll and romp.

He loved it. he loved being naked and crawling around, getting up on the couch, standing at his musical table, etc etc. it is... Simon found his penis!!!

I was starting to get worried given that we'd been hearing for months about his friends finding it and enjoying it (or in one case pulling on it and not making the connection to the point of crying "oooowwww, who's doing that?!).

I understood his avoidance given that he'd had his catheterized no less than 4 times in the hospital. Still, I was sad that there was no exploration down there.

Not true anymore.

He's quite enamored with it and now gets sad when we decide that naked time is over and put on a diaper. He's clearly confused why we've introduced him to this new plaything and keep putting several layers of material between him and it.

I felt like a normal parent. Yay for Simon's penis!!!

(I never ever thought that I'd put 'yay' and 'penis' in the same sentence- nothing personal to you's out there that have them. It's just been a very long distance kind of relationship for me and the penis)

Back to our story...

So we're now having a morning where Simon is clearly not having a good time. He can't stop coughing and crying and then we hear it.

There's a distinct wheeze in between coughs.

FUCK. A wheeze. It's there.

And my heart leaps backwards about 16 months and starts screaming "Go, GO, GOGOGOGOGOGO. Get to the Hospital!!!!!!"

I take a breath and remember that this is not that baby of 16 months ago and we have time and some calls to make.

The Cardiologist on call (love to Dr. Saba) is wonderfully calm and reminds me that it's most likely a chest cold and a simple bronchial dilator (like Albuterol) should take care of it.
We talk about whether to get to a clinic up here or if we should pack up and head home about 6 days early from our vacation.

Mind you, Simon and Albuterol are not a good match since one has a heart that likes to race and the other is a med that makes the heart race. Not a love-match.

After talking with an on-call advice nurse for the local clinic and an actual clinic nurse ("cardio what?" and "geez, sounds like your son has quite a bit going on"- the last one after I listed all of his medications) we decided to get him seen by someone that actually knows him.

Even the on-call Pediatrician from our practice back in Oakland (that I got on the phone next) suggested that he get our own Dr. Winokur on the phone so that we could talk to someone that really knows him.

Mind you, it's only 7:30 a.m. now and we've been up for about an hour. However, I will say that at this point time feels like it's crawling and I am a little nauseous thinking that we are at least three hours from Oakland and that's only from when we start the car and pull away from the cabin.

Dr. Winokur calls within ten minutes, comments on the beauty of the Mendocino coast and then gets the run down. I tell her we've talked to cardiology and that the assessment is that it's not cardiac and most likely Simon needs a bronchial dilator. I ask her if that's not a problem given his heart condition.

She replies that it's not a problem if it's monitored closely but is more concerned that it might be RSV (Respiratory Syncytial Virus) which could be a real problem for him.

This is followed by the statement "I wouldn't really go to anybody up there."

Done deal.

I think I was already pretty much there, especially with the "cardio my-what?" comment but this had me packing.

I will say that I don't have anything against small town medical clinics. I know there are wonderful Dr's and nurses and medical personnel that give stellar care.

Simon needs a little more.

I love Jaime.
Within 30 minutes we are packed and ready to go.

I love our friend Abby.
She stayed behind to finish up packing and cleaning the cabin and drove herself and Roxie home (Roxie was so freaked out, she managed to get herself out of the hatchback area and into the front seat and onto Abby's lap WHILE she was driving on Hwy1. Roxie is 55 pounds. Abby managed to not kill herself, Roxie or anyone else while dealing with this situation. She deserves a medal, or at least a biscuit).

We have to get to Dr. Winokur's office by Noon or else we'll need to go to the ER.

Have I mentioned it's New Year's eve?
It's New Year's Eve. That's not a time you want to be in an ER. Any ER.
It's the height of cold and flu season. That's not the time we want Simon in any ER.
We do not want to go the ER.

Blessed baby slept the entire drive on Highway 1 and most of the rest of the drive. We made it with 15 minutes to spare.

Simon is a trooper.

Dr. Winokur was able to rule out RSV and prescribed and simple inhaler for Simon along with some Prednisone (steroids).

So not fun trying to hold the mask to his face and get him to breathe in the Albuterol but so relieved that we're here and not in the ER and not dealing with something like RSV.

After a half dose of Albuterol Simon is already sounding so much better.

We head home with a familiar baby in the back seat and by the time we're getting out of the car, Simon is back.

And then....Simon is back with a vengeance!

There's something that's happened to our little fella since his first hit of Albuterol and subsequent regiment of steroids.

He's turned a little bit bionic.

I understand the Albuterol making him a little amped up. That's to be expected. However, in the five days since.....yes, his cough has been clearing but holy crap has he been up to just a few other things.....................

Simon took his first solo walk. Seven steps from Mama to Mommy.
And then back again.
And again.

He did it four times. He won't do it again but then let's remember who we're talking about.


He's eating!

We're not taking his G-tube out anytime soon but holy crap!!! He wants something to nibble on all the time!
He brings a full spoon to his mouth and licks most of the food off of it!! He drinks from his water bottle!!
And he does all these things over and over again!!!

On Sunday we went out for Dim Sum and I swear to god that boy sucked a piece of pork (three in fact) so dry that I could have put a tag on it and Roxie would have a nice new leather collar. He also chowed on some sesame ball with bean paste and got jiggy with some egg custard. It was awesome.

Today (Monday) he has worked some carrot, tofu, asparagus, Trader Joe's cat cookies, prunes, avocado, egg, fruit leather and miso soup.

I know there are serious side effects to Prednisone with long term use but hot damn, who cares if he's really hairy and gets called 'moody'. I'm totally pro-steroid now.


I did cry a little at dim sum because all of a sudden I was having a typical toddler eating experience.
I got completely fahklempt. There I was, out with my 21 month old child, and he was making a mess at the table but also taking bites from my hand of offered food. It was ridiculous but I'd never had that experience before and it felt so normal. Just not my normal.

Up till now.

I really hope it doesn't go away.

We finished our run of Prednisone today. I hope hope hope that we can keep this momentum going and even if the 'roid' effects subside, I would love love love if the enjoyment and delight in eating stayed.

My secret dream is that 2010 is the year in which we begin talking about taking Simon's G-tube out. Just maybe.

As much as I am loving the 'roids' I will say that I am also very happy to be done with them. It's true about 'roid rage'. I've heard the expression and I will say that Simon has been exhibiting some interesting mood swings these last five days that we have previously not seen the likes of.
He has also stopped napping and I would love that to come back too.
That combo, of steroids and not napping, might have something to do with the mood swings, maybe I don't know but I will say the first day after starting the steroids, he did in fact sleep 4 hours and STILL was a nutcase.

My sweet sweet nutcase.
Holy crap I love him.

More pics to come in the next post.