Friday, May 15, 2009


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Tonight I am tired.
I am tired of drawing meds.
I am tired of "hooking my son up" to feed him.
I am tired that there are #'s to be waited on, labs to be drawn and Echo cardiograms to look at.
I am tired of waiting for OT to start..
I am tired of hospital bills, co-pays, and insurance companies that can't get a damn thing right.
I am tired of extra shots and immunizations.
I am tired of counting every one of Simon's calories.
I am tired of never getting to wear the same clothes at night that I put on in the morning because of vomit.
I am tired of doing laundry.
I am tired of having to ask for help to pay the bills.
I am tired of not just getting to blog about milestones and cute moments.
I am tired of dreaming and planning for trips and visits that most likely won't happen for years,
I am tired of not being able to make play dates because of colds, fevers, whatever.
I am tired of worrying about how the weather will affect my son's heart.
I am tired of having to think about "training" people to babysit.
I am tired of sometimes feeling my life as a sliver compared to my life as a medical caretaker.

Tonight I am tired.
Tomorrow starts the weekend and time for Farmer's Markets and time with Jaime and friends, and many hands to make light things that are sometimes heavy.

Tonight I am tired and my heart is weighted down with how much I love my son, my family.

Wednesday, May 13, 2009

Late Night Comedy Show

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Better than Conan, cuter than Leno, with better hair than Jimmy Fallon...It's the comedy stylings of Simon Fitch-Jenett after dark!!

Holy crap dude.
Simon was up until 11:10 last night (and that's just the time that I laid him down wide awake but at least quiet)
He was in rare form and we're not quite sure why.
The one reason we can think of is actually a great story to tell.

Simon had an amazing dinner time with us. He ate more than he's ever eaten and there was a marked decrease in his gagging and throwing up. He even opened his mouth and moved towards food that was being held a couple of inches away. It was a beautiful thing!!!
One of the new things he was enjoying were these Gerber food yogurt melts ("freeze dried whipped yogurt"). Total crap (the 2nd ingredient is sugar) but they melt quickly and he was enjoying them in a way that he hadn't other things. I think the sensation of it melting so quickly was 'safe' for him.

So Jaime puts Simon down for bed around 8:00 and at 9:00 we can still hear him talking to himself in the bedroom. He seems quite content so we just let him keep squawking thinking that he'll put himself to sleep eventually like he'll often do.
At 10:00 as we're getting ready for bed we finally hear quite and head into the bedroom. Simon is standing in his crib eyes wide open and just two steps into the room he greets me with a smile rich "Hiiiiii".
Jaime's on round one. She gets him quite again and lays him down. We brush teeth and get ready for bed. 20 minutes later we are lying down and thinking that it's late but not the latest that we've ever been up with Mr. Shimmy.
Another few minutes of hearing him rustle around in his bed and finally stillness. Then 30 seconds later I turn over feeling something not quite right.
There he is again. Standing up looking at us in the dark....pausing for dramatic effect before issuing forth a resounding "Hi" followed by an immediate "buh bwaaa bwaaa bye biiiiiiiyye bye".
Jaime and I cannot help but start laughing which of course only feeds his inner performer.
I take him out of bed and we settle into the rocking chair for what has been the "big gun" for sleep in the past. Essentially starting the bedtime ritual over again with an elongated James Taylor 'You can close your eyes'.
He's not having it. In between each verse he chimes in with a tirade of "bah bah shveeeshveeee bwaaaaa buh byeeee byeeeee".
(Little shit won't ever say bye bye to people in the moment but will say it over and over again now that it's close to 11pm at night. What the hell is going on?)
This goes on for another 20 minutes and he finally stops babbling and mellows out some. Jaime has also stopped shaking the bed with her silent laughter and I think 'ok, maybe now he'll fall asleep and we can be done for the night. I get up from the rocker and take the three steps over to the crib and as I lay him down he turns to me (a little exorcist like) and with eyes wide open, smiles at me and whispers short sweet "hi" and turn himself back over. I hear rustling for a little while longer but then he seems to settle into some kind of stillness.

What?!! Jaime and I can only come up with one reason for the evening.
The sugar.
I know that he probably only ingested 2+ but it could happen right?
Simon could have had his first sugar high.
I think that AND he's really starting to show us that he has a sense of humor are why we had such a night. Hopefully tonight will be a little more about sleep than shenanigans.
So far he's been asleep since 8:15 and it's now 10:02
Please, no more late night comedy.
Mommy needs to rest.

That's all folks.

Tuesday, May 12, 2009

Mother's day weekend

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We have just returned from Gualala (in Mendocino County) where we spent a sweet Birthday/Mothers day/ Birthday weekend. Friday was my birthday, Sunday was Mothers Day, and Monday was Dianne's birthday. There was a lot to celebrate. I think I'm still full from all the special celebratory meals that we had.

Simon is still working his way through his cold. Days have been full of coughing and sneezing but still really good spirits but the nights...oh lordy be..the nights have been wicked. And not the kind of wicked since Simon was first born. I know that when I can't breathe through my nose night's are hard enough but when you are just 13(!) months old, not being able to breath through the place that you think you should be able to breathe out of...SUCKS!!

Simon Sez:

OF course lying down doesn't help and since I've just discovered that I love to sleep on my belly, I can't understand why my mommies keep flipping me over so I'm on my back. They think they're helping but really nothing does so why not let me sleep on my belly.
It's hard though when my mommies have also propped me up on two big pillows so that I'm not likely to choke on my chest phlegm that I am really good at coughing up into my mouth. Mmmmm. This is not a great way to get over my gag/swallowing thing. I'm working on it though. I'm getting good sleep during the day though cuz my mommies and Mamaw hold me upright while I nap. That is very nice of them.

It's also really nice when Mommy holds me upright at night. I can get some better sleep then. I don't think she does but developmentally I can't take that in right now. Like my bib says "It's all about me."

Dig it.

So there you have our long weekend in a nutshell. It was fantastic to be with family, so wonderful to breathe that ocean air, introduce Simon to the wonderful world of river rocks (an awesome and never ending supply of teethers), and just be together with very few distractions.

It was a great recharge.

We're home now and Simon is still snotty but last night only woke once and was able to put himself back to sleep in less than 20 seconds. It's still scary to see him struggling with a cold. It means so much more than when anyone else is working through a bug.

I just keep hoping/ having faith that even though his ECHO and EKGs and blood tests tell us he has no reserves, Simon actually has more strength and life working in his little body that his doctors or I can imagine.
Go little man, go.
Highway 1 does not agree with me.
Highway 1 might not but this sure does!!
So does this

Picture window? Or picture perfect?