A Seventh Birthday

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Categories: Blog

Carolyn Savage

Seven years ago today a little girl bounced into our world at a whopping 2 pounds 15 ounces.  We learned immediately that what she lacked in size she made up for in spunk!

Mary Kate, 2008

Seven years later Mary Kate continues to amaze us.  When not reading her favoritie American Girl book she loves making her baby brother laugh and playing Calico Critters with her two little sisters.  In addition to loving ballet, soccer, running and acting Mary Kate is always up for a snuggle with a side of sass.

Mary Kate, 2013

Mary Kate, 2014

Tonight is her final performance in CTW’s production of the Unprincess and never has their been an “Annie the Inn Keeper” who nailed her part with such enthusiasm.

Annie the Inn Keeper getting her make-up!

MK with Aunt Jo Jo

 

We are so very proud of our girl.  It is a pleasure to parent her!

 

Happy Birthday, MK.  We love you!

 … Read the rest

He Laughs in His Sleep

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Categories: Blog

Carolyn Savage

I could probably leave it at that because he really does.  The first time I saw him do it I thought it was gas or a fluke, but I’ve now witnessed the phenomenon repeatedly.  It truly is laughter.

 

Of course, he has reason to smile.  He is four months old and thriving.  Weighing in at a healthy thirteen and a half pounds, Nicholas continues to slam dunk all of his milestones.  With the exception of a run-of-the-mill ear infection, he has also managed to remain healthy.

Thank God.

As for the rest of us, we are adjusting to our new normal.  Being the mother of six is a lot.  A lot of chaos.  A lot of laundry.  A lot of crazy.  And, a lot of love.  Every time I find myself dragging due to sleep deprivation I remember where we stood only a few months ago and mutter a prayer of thanks giving.  We are so very grateful.

Amidst the gratitude there is still a little bit of angst.  Because Primary Ciliary Dyskinesia is genetic we were encouraged to have our other five children tested for the disease.  Sean and I were genotyped last month and we know now that we are both carriers of a mutated CCDC 40 … Read the rest

And Then The Doctor Called…

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Categories: Blog

Carolyn Savage

I’ve noticed that many of you tend to worry when I get quiet.  Most of the time your concerns are unfounded.  My lack of presence is due to being trapped under multiple loads of laundry or being sequestered to my car depositing children at their various activities.

Unfortunately, this most recent silence isn’t that simple.

Last Tuesday Sean and I were summoned to a conference call with Nicholas’ pulmonologist.  As we waited on the line for his doctor to join the party we were both silent.  We knew the genetic test results were back…and we knew that our required presence for an explanation probably meant we were about to get some disconcerting news.

Neither of us could talk.  I can’t speak for Sean but I was quiet because I feared if I opened my mouth I just might throw up.  In fact, I was so sure of what I was about to hear that I spent a minute or two trying to decide where I wanted to be in my house when I heard the doctor say it.  Which room did I want to forever associate with bad news?

I chose an upstair’s closet.

Now before everyone gets too upset let me put you at ease a bit.  There is … Read the rest

A Little Smile with A Side of Good Health…An Update on Nicholas

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Categories: Blog

Carolyn Savage

We’ve been home now for nine days.  Nine days!  Nine days without listening to the alarms of hospital monitors and hearing the cries of sick children.  Nine days of waking up to the whimper of a hungry baby instead of waking up to the whimper of a baby being examed by a resident before morning rounds.  And, most importantly, nine days of continuously improving health for our baby boy.

Dare I say we are turning a corner?

I’d love to report that Nicholas is completely better.  I can’t.  I had no idea his recovery could take months. That being said, he looks and sounds better than he ever has.

Thank God.

I’d love to also report that Sean and I are feeling more comfortable regarding his diagnosis.  I guess we are…kind of…but there is still a lot of uncertainty.  That makes us nervous.  We have been told multiple times that we may never know exactly what caused Nicholas to get so sick.  The only thing we know for sure is that it wasn’t just one thing.  It most likely was a conglomeration of little things that came together creating the perfect storm.

Here’s what we think may have been the contributing factors to Nicholas’ illness….

    Nicholas has a grade one
Read the rest

Nicholas Update and A Dose of Perspective for This Crazy Time of Year

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Categories: Blog

Carolyn Savage

This morning when I turned my laptop on I had a moment.  I’ve had the very same moment a few times before and trust me when I say when it happens it’s weird.

It’s weird when I’m signing onto my email account and my own face pops up as a “top story” for the day.

It always surprises me when my pregnancy with Logan resurfaces in the media.  Usually I blame it on a slow news cycle.  Why else would a freakish story from what seems like a life time ago be front and center for people’s reading pleasure?

Today the incident struck me as different.  More significant.  A reminder of perspective.

You see, the headline says our pregnancy with Logan left Sean and I ‘terrified’.  I guess, at the time, it did.  Being pregnant with another couple’s genetic child after a medical mistake is scary.  But not as terrifying as what we’ve endured the last six weeks.

Not as terrifying as not knowing why our seemingly healthy newborn son’s lungs keep collapsing.

Not as terrifying as being given a laundry list of catastrophic diseases that could be causing our son’s health issues.

Not as terrifying as watching our beautiful baby boy screaming in pain after being poked so many Read the rest

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