Crazy Busy Saturday

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The big wild boys had a wrestling tournament today.  Though they didn’t win, they learned valuable lessons which will make their next wins so much more appreciated.

Plus they still put their best on the mat and brought home trophies :-).  There was so much skill and incredible intensity on those mats today. 

And even some tears.  Those little ones gave it everything they had and I found myself blinking away some tears.

After the tournament, Isaac, Marshall & I visited Michael’s studio to catch some AMAZING talent. 

(The above pic is Marshall’s first listen to a live drummer on a full kit!)

Many, many thanks to all who were involved in helping us today!!

Fundraiser Update

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Marshall’s fund has now crept up to nearly $3,000.

Which means it’s time for us to decide how to best invest the donations to in turn be able to establish long term success in helping other families as they go through similar experiences.

Honestly, I can’t thank you all enough ❤

Ten Pounds Yesterday, Ten Weeks Today

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Marshall is ten weeks old today.

It’s amazing.
And unbelievable.
And just fantastic to be a part of this kid’s life.

He’s incredible.

And to know how far he has come and how much further he has to go is remarkable.

When we left Boston, they said that his second surgery would be when he reaches 13 pounds and is six months old.
I have a hunch it will be sooner.

He is OFFICIALLY ten pounds. He reached that milestone yesterday afternoon during his weigh in.

And all I keep hearing is all of the “they said he can’t” in my head.

They said he wouldn’t be able to feed enough to gain.
He did.

They said he wouldn’t be able to nurse.
He did. And does. Like a freakin’ champ.

They said he wouldn’t develop as other babies do.
Granted I am not an expert but so far he has…with very little delay.

They said a lot.

But I’ve seen the proof. He smiles (since he was three weeks old). He coos. He LAUGHS. He cries tears (one heartbreaking tear usually… since he was four weeks old). He reaches for objects. He rolls over with motivation. He holds his head up. He stands in my lap.

He does all of the things (and more) that “typical” and “not-so-typical” two month-ers do.

And he does all of this with a one ventricled heart.

Just because his anatomy is different doesn’t mean he has to be different, too.

So, if you take nothing else away from this post or Marshall’s story, remember one thing: YOU CAN.

Especially when they say you can’t.

And you won’t know unless you try…so please go try.

Since Before She Could Walk

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Just to update you: Marshall is kicking RSV’s butt.

For that, I’m supremely thankful.

Unfortunately, a cold took much of my energy and it was a rough return home following our stay at Upstate.

The good news is, visitors improved my mind state even if I was feeling lousy.

One of those was Jenn, a really special friend of mine who I’ve known since before she could walk.

This is us (with her mom) circa 1979. My guess is it was her first Christmas:
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[I’m too busy today to fight with the scanner…my apologies]

Needless, in the days since that picture our friendship remained through life’s best and worst moments. Our friendship has seen just about everything a friendship can see. So it’s no surprise that as we grew and our families got bigger, we kind of lost touch.

Life, work, school, and families happen. We live one block away from each other and only manage to see each other a couple of times a year.

The good thing about dear friends is we can pick up or leave off and the friendship remains. Always.

And the best thing is Jenn’s got a heart of gold and will be anyone’s best friend.

Which is really lucky for me. Else my life would be a little less happy.

And of course we both got tearful when she FINALLY [braved a plethora of stress and germs] to hold our miracle for hours and hours.

Especially considering all it took to get to that very moment (which I captured):

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I can honestly say I haven’t laughed so hard in at least a year – if not longer – than I did when Jenn visited.

Thinking about her visit still warms my heart.

Many, many thanks for taking the time to meet our little man and to catch up!

$233,859.20

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The balance (so far) for Marshall’s care at Boston Children’s. 

The heavily accented female voice in billing who took my call wouldn’t give me the exact figure right away.

I had to ask three times.

She gasped at the number the first time I asked.

The second she offered “233” and a feeble “Well I don’t have the figure at this time…with the insurance..”

And the third time I begged.

$233,859.20.

Yes, that is what I owe until the insurance company decides to pick up the tab.  And even IF (take nothing for granted, folks) or after that, I will owe 20% or whatever the max out of pocket is.  

You do the math.

This does not include the $5195 balance for his <7 hr stay at Brigham and Women's NICU on his first day of life. 

Nor whatever else got lost in the paper shuffle.  Nor the copays for his doctor appointments and medications.

Nor the other financial obligations of raising four wild boys in this crazy world.

I am going to sit down til I can catch my breath…and ponder this:
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2 Months Ago Today

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Marshall was wheeled away from us after 6 days of falling head over heels in love.   That day we had to put our blind trust and absolute faith in the skilled hands of Dr. Baird, Dr. Luis, and a huge team of Harvard’s best. 

And then we had to wait. 

For what felt like lifetimes. 

And then we found out he was ok…I can’t describe the relief. 

Flash forward to today…

He lost the last of the 8 stitches from his first surgery this morning just before he took his bath.

Soooo supremely thankful for every moment (even the not so good ones) of the past 8.5 weeks.