Model material

It is a lovely rainy Saturday and Simon teething on some tupperware tops. The house is cozy with the smells of Jaime cooking and Roxie is tuckered out from a nice long beach romp with her friend Luna (Laura got to walk with her friend Wowlven and cutie patootie Elka Rose).

Simon is a marvel. He is marvelous. He is a weak hearted, marvelous, growing, drooling, baby boy.

Jaime really thinks we should get this boy into modelling. Your thoughts?

Shave and a haircut...two bits

Getting some Pilates instruction from MM

(gotta work off that whipped cream-)

Did you really think it was shaving cream in the above picture?!

Thanks MM. I'm feeling really fit now.

The Original Butz Keppelah (Head Bump in Yiddish)

More Bath Photos- Who can resist?

Yes that's a hospital bathing tub on his head. So what?

Big love to Team Shimmy out there

No words

Just enjoy a glimpse into a likely future

Courtesy of Fred

Thank you Fred.

Thank you.

Really, thank you.

The Curse of A Well Adjusted Child

Get ready for a completely irrational rant.

Simon doesn't think I'm special. He doesn't cry when I leave the room and/or go out for a few hours. He doesn't mind being passed to any number of people. He doesn't reach for me when he's upset (that doesn't mean I can't comfort him but...) and he can get shy when we're out and about but there's not much more than a head turn that happens.

It's sick but there's a part of me that wants that. As the primary caretaker shouldn't there be some sort of feeling of Mommy-short hair = home base and safety?

I know that might be there and Jaime and I are just not getting to see it since the little man might just be really well adjusted given all that he's been through.

Maybe we've done the job we wanted to do (not that we're done) with having Simon understand that there will be hard/painful times BUT that we wait for the next good time and when it comes we enjoy the heck out of it. And that there's almost always some kind of good time to be had almost immediately right after a hard time.

Maybe that's sunk in a little for Simon.

Big F***-ing deal!!!

It's sick but I want to feel that special burden of being the only one that can soothe or calm my son when he's upset. He's just 1 year old, is it so wrong that there's a part of me that resents that he seems to be able to do that for himself.

He did so well at his birthday party. He rocked the 4 hour Seder. He's been fabulous with so much family in town and all the dinners and brunches that we've been dragging him to. He's just been great. Happy as a clam.

Little f***er.

It's sick. I know it's sick, and that I'll be kicking my self in the head when all that changes and he can't let go of my pant leg when I really need to pee or get the phone or take the muffins out of the oven (like I'm the one ever baking muffins right?)
It's deranged, I know it is. Still, I want it. I want it bad. I want that clinging.

What is wrong with me?

Anyone have a tree monkey I could borrow for an hour or so?

Social Simon

Can't write much right now but wanted to share some recent photos of Simon gettin' around.

The Passover Seder was an incredible gathering and between that and his B-day party and family visiting, all three of us are plum tuckered out.

No BNP this month and his Echo looks pretty much the same. Here's to keepin' on.

Love to all.

Simon and his Big Boy Friend Morey sharing a laugh

Shimmy's first and probably last "pony" ride (Laura has bad luck with straddling things....)

Simon wearing Jaime's favorite shirt for him

On a play "date" with the lovely Elka Rose

Shimmy loves his PopPop

At the Seder, Simon thinks he spots Elijah

Where do we go from here?

That title refers to a lot but in particular two thoughts:


One

How do you come down from the amazing day we had Saturday with over a hundred (120?) celebrating the life and spirit of our amazing Shimmy La.
It was incredible to look out at the park and just see blanket after blanket, group after group, of people there to join in our celebration. People that I had never met before, or at most only once, there to share with us our gratitude and amazement at this little man who has taught/brought us so much.


It didn't even matter that I didn't get a cupcake or Vietnamese sandwich (you crazy, starved people you). It was all so wonder-full and so hard to come back from.

Simon is still trying out his new toys and outfits (many of which will be replacing older ones that we can pass on to the PICU at Children's Hospital- thank you).

I still can't believe it. The love was so intense, for Simon certainly, but also for Jaime and I. I said it at the party and I'll say it again. I really don't know how all three of us would have made it to this point in time if it weren't for all of you.

Unending gratitude.

Whatever will we do for his 2nd year party?!! ;-)

The other "where do we go from here?" is more of a 'back to the real world question for Mr Shimmy.

We had our full occupational therapy evaluation today to see how we can best proceed with getting our little Simon eating again.
I was so looking forward to this as it seems to be the last bastion of how Simon presents as sick.

How amazing would it be to have my son eat food with his mouth; experience the thrill of finding something so delicious that you can't get enough; or taste something so horrible that you know that you'll never ever put that in your mouth again (until you're in your mid twenties- that was beets for me). I cannot wait for Simon to begin clearly expressing likes and dislikes around food. I love food. I love what the mouth, tongue, and nose can do for you. It can take you so many different places and teach you so much about this ginormous world we live in. Eating something delicious in the presence of loved ones, or even sharing the worst meal ever, can bond you with family, friends, and lovers (potential and settled) in ways that I count as some of the best times in my life. I want to share that with my son.

Today was about getting our family one step closer to that.

Alas, not quite. I admit there was a small but very excited part of my brain that imagine that our OT person would come in, assess Simon and then give Jaime and I three or four concrete things to do and say "Simon will be eating in three weeks/months/whatever.

Nope.

She pretty much said that we were doing a great job and keep it up. He's a great candidate for learning to eat and there's not much (a few things) to do differently. She went on and on how great he looks and how we're really doing just about everything right for him.

I could feel the frustration begin to build and while I was happy to hear all of that (I'm always happy to hear how good he looks and well he's doing)...by the end of the visit and then on into the rest of my day, I felt the depression set down.

I'm tired. I'm tired of there being no outside answer, no medication, no procedure, no set of exercises...I'm tired of there being no cure or even quick fix.

I know I know. Don't say it. I'm just venting.

I love my time with Simon. I love our days. He is such a beautiful boy, living large and surviving in spite of his heart having gotten so sick. He is a miracle of the first degree. No doubt. I really wouldn't have it any other way.

Except for the way that I dream about sometimes where there's a miracle cure, clear steps and a finite timeline to getting him eating, and a coach/guide for me that would be there anytime I wanted for guidance, company, and to tell me "Laura, if you just did this, this would happen."

*sigh*

That would sure be nice.

Other than that it's a beautiful day. Simon's right at the end of a three hour nap (changed the timing of it on me again- little stinker), we're getting a new car seat today, and Jaime and I have a date tonight. It's all good. It really is. The car seat by the way is a gift from Jaime's former co-workers from the John Muir Women's Health Center. They all chipped in and got us (wholesale) one of the best on the market. Such a gift! Such a marker that our little man is no longer a baby 'little man' but becoming a toddler. Crazy.

I will end with a love letter to my wife (who is an exhibitionist and doesn't mind you reading long).

Jaime, you and I have been together almost 7 years. In the last year we've had more difficult moments, 'bumps', and yes let's say it, fights, than we've had in the previous 6. I think that's saying something to start with. Then there is the beauty in which we bounceback. I have no doubt where Simon is learning his 'bounceback' from, it's us.

Because being out of sync or having tension with you is so far from where I want to live, I think that we have this beautiful way of moving through those times. Definitely not letting the subject go, but clearly wanting to get back to loving, compassionate, humor-filled and passionate communication is a priority. There is no one that I can imagine doing this with and no one I can imagine doing this so well with.

You are my Bashert, my chosen one. I love you so completely but still in ways that I haven't discovered, as this last year has taught me. I miss you terribly on Monday mornings but love getting those calls from work where you share how you're kicking ass and loving your job. I love you. And I can't wait to see what kind of boy/man Simon grows into because he gets to live in that love every day.

Thank you Jaime. Thank you for making family with me. Thank you for making home with me. Thank you for growing Simon with me.
I heart you.

Laura

Best Birthday Party on the Block

Holy crap people. We counted over 115 people and we're pretty sure we're still missing a few. It was so beautiful! We had a song from our bard Cody, beautiful Hula dancing from Auntie Karen and friend, a crapload of cupcakes from various aunties, visits from some of Simon's lifesavers in the hospital (Dr. Williams, Dr. Rosenfeld, Nurse Megan and a group of other CHO rockstars!) as well as friends and loved ones from all our various circles.

We only caught a few pics, but know that there are some awesome ones coming in from others, so we'll post more when we have them. Here's a start:

Mmmmmmmmmmm cupcakes!

I swear I heard the table groan from all the food

Simon, looking quite adorable, with Mamaw

Simon, with his half sister Emily

HOLY PRESENTS!!!

Simon can have his cake and eat it too!!

We had a most excellent birthday dinner for Simon with 3/4's of his California Grandparents (we missed you Ed).
Grandma Nola made a most delicious Angel food cake for our little Angel and Simon was way too excited to sample his first Peep, chocolate icing, and freshly made whipped cream.
It was a sweet sweet night as you can see.

Simon's new hat from Mamaw

What?! What are you looking at? I'm cake-boy

Mommies and cake-boy

Mamaw D, Grandma Nola, G'Pa Bruce and Cake-boy

Grandparent Love

Mmmm I like this peep thing

Happy One Year Old

Before the assault

One Year Today!!!

Birthday Royalty!!

Today is Simon (and Alicia's) Birthday.

Amazing.

One year ago Simon decided, with the help of some prostaglandins, that today was the day and we didn't have to wait any longer.

For those of you that don't know, Simon's original due date was April 1st (no foolin') and by April 9th our Midwife suggested that we try a mostly non-invasive procedure to get things started. I say mostly because the procedure does involve having some one's (an OB) finger separate the placenta from the uterine wall to release the prostaglandin hormone and there's a little something invasive about that ;-)

Within minutes I was having full on active labor contractions and 7 hours later....there he was.

And here we are one full year, 12 lunar cycles, 52 weeks, a whole set of holidays, a new american idol season, and of course all that other stuff that fills up a calendar year... later.

Oh right and then there is all that other stuff that has filled this year. One terrible terrible day that started off so many terrible, wonderful, scary, horrific, forgetting to breathe, connecting with new and old community, being in the moment, getting ready to say goodbye to my son, crying on the floor, holding on to Jaime, intubation, blood tests, echo cardiograms, spinal taps, lines going in, infected lines coming out, breast feeding, bottle feeding, bolus feeding, pump feeding, hospital cafeteria feeding (the grown ups), trips cancelled, visitors from the east coast, new friends, old friends, food drop offs, hospital baths with Carol, tubes, tubes and more tubes, finally less tubes, medications, and moment after moment of enjoying Simon....days.

His smile, his skin, his gaze, his laugh, his hands reaching, his body growing (and growing and growing), his spirit.

Simon, one year old today and so much more.

I want to cry and laugh and shake all at once, all day long.

Thank you
Thank you
Thank you.

Birthday Party Info Again

Simon's first birthday is coming up April 9th.

In the absence of a big pile of money from a celebrity to have an outrageous party, we'll be having a good old fashioned lesbian potluck (non-lesbians very welcome to attend!) to celebrate Simon beating the odds and making it to a chubby, smiley, happy, first birthday.

Saturday April 11th

2 pm - 5 pm

Lakeside Park Oakland

There is a BIG playground nearby, a large Picnic table, a huge expanse of grass (bring blanket to sit on or folding chair if you want to) and bathrooms nearby. We plan to just have a mellow, rolling-in-the-grass, face -stuffing, celebrating-miracles time of it.

Bring your kids, bring your parents, bring anyone who has ever heard of our dear son and wants to meet him in the flesh. Bring a guitar. Bring a drum/ tuba. Bring a song to teach and/or share. There will be speeches and singing and merriment galore.

We want this to be an opportunity for anyone and everyone who has been tracking his progress and sending him love to come and show your face so we can thank you in person. This means *you*!

We'll provide sandwiches, you bring a side and/or drinks.
We got plates and cups and such.

Please email lafitch@gmail.com if you think you'll be coming and roughly how many people you'll be dragging along with you, just so we can plan the sandwiches.

Directions:From San Francisco:
Bay Bridge and take the exit onto I-580 E toward State Hwy 24/Hayward - StocktonStay on I-580 E toward Hayward - StocktonTake the exit toward Lakeshore Ave/Grand AveTurn right at Grand AveTurn left at Perkins Ave (there is a Gas Station on the corner- go left on Perkins here)Turn left on Bellevue Ave (It's one way) to find parking


From Peninsula:
Cross Dumbarton or San Mateo Bridge and get on 880 North
Take the Oak St exit toward Lakeside Dr
Turn right at Oak St
Continue on Lakeside Dr
Slight left at Harrison St
Turn right at Grand Ave
Turn right at Perkins Ave (there is a Gas Station on the lefthand corner- go Right on Perkins here)
Turn left on Bellevue Ave (it's one way) to find parking


From Berkeley:
Take 580 East
Take the exit toward Lakeshore Ave/Grand Ave
Turn right at Grand AveTurn left at Perkins Ave (there is a Gas Station on the corner- go left on Perkins here)
Turn left on Bellevue Ave (It's one way) to find parking


From BART (about a mile walking)
Go to the 19th Street Station
Head northeast on Broadway toward 20th St/Thomas L Berkley Way
Turn right at Grand Ave
Slight right to stay on Grand Ave
Turn right at Perkins Ave
Turn left at Bellevue Avenue
Find street parking anywhere
We will be under the trees right where Perkins Avenue forms a T with Bellevue.

Can't wait to see you!

Nude but tasteful

Here are some Photos of our 'sick' son

Bath time April 3rd 2009

Showing his true Ewok heritage

Mama and Simon



That gaze...that tongue...just for you

He's using his powers here to make you fall in love with him.

Working yet?

Somebody loves him some bath time

It comes within centimeters of being obscene

So frikkin' cute

Aaaawww Yeah

He just loves it



If you look hard you can still see remnants of peas on his face.

Joining the E.R. Club

Jaime here:
I got my own personal E.R. visit this morning. The end result is that I'm fine, but the last few days have SUCKED.

I've been feeling periodic dizziness and shortness of breath since last year, a few months before Simon was born. I have been chalking it up to anxiety, since I have a history of panic attacks and sometimes just generalized anxiety. I went to see a doctor about it then b/c I wanted to rule out anything scary. Got a clean bill of health and just worked on managing the symptoms. Then, a few months ago a started to feel some pressure in my upper chest that would spread up to the top of my neck. A little concerning, but probably anxiety. Then this past Sunday I started to feel heart palpitations. Not like 1 or 2 fleeting ones, but like 20 throughout the day. Then I would have a combination of shortness of breath, dizziness and/or shortness of breath. Not fun and definitely more intense than usual.

I went to see my primary care doctor (love her!) on Monday and she took my complaints seriously given my symptoms and terrible family history re: heart disease. She began a cardiac workup including an EKG and bloodwork. The EKG in the office showed a variable heart rate but nothing super clear, so she decided to have me wear a 24 hour Holter monitor (device that tracks all heart activity for 24 hours). I planned to pick it up the next morning.

That night I felt a bunch of palpitations and since we have handy dandy stethoscopes all over the house, had Laura listen. She could definitely hear the hiccup. I called my Dr. and she said that basically unless I was having severe symptoms (extreme breathlessness/passing out), there wasn't much to do. If I went to the ER. they would just send me home and tell me to see her the next day. That made me feel a little better that she wasn't super concerned but I still felt like crap and pretty symptomatic.

Tuesday morning I picked up the Holter and the diary to record symptoms. I was supposed to write down every time I had a symptom and the time and they would check it against the monitor printout. I hadn't realized it until I had to write it down, but I was having some type of symptom averaging every 10 minutes. Sometimes it was every 3 minutes, sometimes I'd only have 3-4 in an hour. It sort of freaked me out to realize how frequent they were.

I turned in the Holter yesterday morning and then learned that they wouldn't have any results for 3-7 days. I called for blood work results- totally normal, so it wasn't my thyroid. However my symptoms just kept increasing to the point that last night, at my Mom and Stepdad's 20th wedding anniversary dinner, I really couldn't eat and felt breathless and horrible most of the time.

I had a rough night's sleep last night and then called the on-call doctor at my primary care office at 6 am this morning. I told him what had been going on and that my symptoms were getting worse and asked if I should go to the E.R. or just hang tight. He suggested I go to the ER to see if they could pick up something that they Holter might miss and because we'd get results sooner. I felt so relieved. The idea of waiting 7 days to find out what the hell was going on, when I felt so badly, made me just want to pass out.

Laura and I tried to figure out if we could get someone to watch Simon, but realized it just wasn't really possible at 7 am so I went by myself. They got me in right away and took a preliminary pulse, bp and blood oxygenation. Everything looked good. They put me in a room and started hooking me up to a heart monitor and a pulse oximeter (measures oxygen saturation in the blood). Heart looked pretty good but my pulse ox was 88. It should normally be 97 or higher. They thought maybe it was because my hands were cold, but they put me on a nasal cannula and it picked right up. That's usually a sign that something is up. If the Oxygen brings it up, then it's not the sensor, it's the person. The monitor above me kept dinging and the 2 nurses kept looking at it, a little worried. I was starting to feel a little nervous that there actually might be something kind of big wrong.

The doctor came in (the same one who saw Laura when we had to go to the ER for her back pain when Simon was still in the hospital) and he asked me a bunch of questions and then felt behind my knees and in my calfs. I realized he was checking for a blood clot in my leg, called Deep Vein Thrombosis. They're dangerous b/c little pieces can break off and go to your lungs. My old boss had this happen (called a Pulmonary Embolism) a few years ago and it took her out of work for months.

He ordered a blood draw that included atest that would check to see if I had a Pulmonary Embolism and a chest x-ray. Depending on what that showed, I could expect a chest CT scan to find the clots if they were there. The doctor left and I asked the nurses if they could tell me anything. They said it didn't look like it was a cardiac issue but that the doctor thought I might have a pulmonary embolism given the shortness of breath and poor oxygenation. I felt a really weird sense of relief. Pulmonary felt a lot less scary than heart. Call me crazy for preferring a blood clot in my lungs to a cardia arrythmia, but I felt a little better.

They started an IV, drew blood and then I was taken to have a chest x-ray. They said it would take 45 minutes to get the results of the bloodwork to confirm if there was an embolism, so I called Laura in the interim. Poor thing. She was not as comforted by the news of a possible Pulmonary Embolism. I joked that Simon and I could take Coumidin (blood thinning medication) together. Again, she did not think that was very funny. I can kinda understand...

About 20 minutes later, the doctor popped in. "We're sending you home", he said with a smile. "You are the picture of health. Whatever you are doing it, keep doing it. Do follow up with your primary care and get the results of your Holter, but you look great. By the way, did anyone ever tell you that you look like Frances McDormand? In a good way. She's more blond and you're more redheaded but you totally look like her". And he was gone.

HUH?

So, evidently, I can climb Mt. Everest AND I need to get crackin on getting my anxiety under control. Guess that will be my new project.

Operation CHILL.

We're ok

Simon's doesn't have a gut bug. We may not have to pay$600 a month (unclear) and he's still putting on weight in a more than acceptable way.

Plus he looks like this.

No pictures please...talk to my agent

Ok, ok, just one

We're doing ok over here in Oakland. The sun is shining, Simon's gotten an 'ok' from his Doctors, and I'm not letting the pukey morning bother me.

This time last year I was wondering when the heck the little man was going to come out! Today? Today? On his actual due date?

April Fools!! Not for 8 more days.

He was interested in teaching us lessons even then.

Most of the time there is nothing to do but be in the moment.

My lovely little stinker son.

Canada Please

I hate our health care system. If I could guarantee that 30+ of my family and friends would come with...I would so be moving North right now. I hear Vancouver is a spectacular city.
Our insurance is ridiculous and we're just finding out now (4 months later) because that's how long they take to get up to date on the billing.
$600 dollars a month is our copay- COPAY- on our feeding set up. That's a 20% copay that we have to pay in addition to our $1000 a month premium. Not to mention the copays on his medications, doctor visits, and vaccinations. I won't even mention things like dental or vision.

I hate this. For so many reasons I hate this. Hate it.

All those years of putting savings away, thinking that I was being so smart thinking about my later years. Never ever working a job that had any kind of pension plan (who has that now?!!), I always put at least 15% right into a retirement account. Always looking for an additional $50 dollars here, $100 dollars here to just sock away and pretend doesn't exist. I thought I was being so smart.

Who cares?! What kind of difference does it make when the cost of being sick can wipe that out in one fell swoop.

I don't think it will and we're working all of our system knowledge at this point but.........for crying out loud!!

I never saw Sicko by Michael Moore because I thought it would make me too mad. Now I'm living it (not nearly as bad as most folks, for sure but still) and I can't believe how asinine our system is.
That, and I would have to completely deplete all of my savings before Simon would qualify for SSI and Medical at which point I would then need to go on GA (general assistance/ Welfare) instead of being able to parse out my savings and not cost the gov't even more $$.

Asinine.

Vancouver anyone?