Tuesday, November 27, 2012

Under The Big Top World

A few weeks ago, Brett received an email from his friend Darren stating simply he wanted to help Quinn knock something off her list. What was attached was a gift certificate to The Big Apple Circus!

We got tickets for the day after Thanksgiving. Now mind you, the only circus I have ever been to is Ringling Bros, and I'm pretty sure I've only ever seen it at Madison Square Garden (which bills itself as the world's largest arena most famous arena (thank you Brett!  you'd think after working in the same building for 5 years, I'd know that by now)). So I was envisioning a fun but non-relaxing day in the city. 

the boys having a bit of fun before the circus

What I got was anything but!  The Big Apple Circus is in a TENT - a for real tent! - in the plaza at Lincoln Center. There were maybe 20 rows in the entire place and one ring. Read: Perfect for a family with wee ones. 

The acts were phenomenal - mainly human acrobatic acts that were seriously incredibly. A woman shot a dart and popped a balloon. Upside down. With her FEET. Freaky stuff!

requisite family pic

my current favorite pic - I literally laugh every time I see it!

We did have to keep Miss Quinn's hat on. Not for warmth but to help muffle the noise!  (Note to self - beware of the fireworks at Disney...)
family pic FAIL haha

The boys had a great time - Colin was giggling out loud at the clowns and Reid loved the ponies. Afterwards we picked up sandwiches and snacks from Starbucks and stopped at a playground to eat. 
Colin also had an eye for the popcorn!

you can tell how much I love this kid-
I'm posting THIS pic
because of her face in spite of mine!

We really had so much fun!!!
passed out!

good time had by all!

Quinn's Idea(wo)men: The Lipp Family

Quinn's Benefactor: Darren Mallis

Quinn's Wing(wo)men: Colin, Reid, mommy, daddy

Wednesday, November 21, 2012

Today I Am Thankful For

(in no particular order)

...the physicians who tirelessly pursued a diagnosis, offering us a luxury no other NPA parents have had - knowledge of the disease at only three months, giving us the opportunity to know how much each and every moment counts.

...our incredibly supportive family and friends.  For as helpless as each one of them has proclaimed to be, that simple proclamation and their continued actions of reaching out to us has been more helpful than they will ever understand.

...the two nutballs that roam our house, also known as Colin and Reid, for demanding that we keep our sanity and (at least some of) our wits about us by simply being three and four.
ok, so their nuttiness probably comes from somewhere

 ...the other NPD families, for being there to answer our questions and offer the comfort of community even as they continue their own disease-related struggles.

...our home, which was spared the wrath of Sandy, as we have seen how awfully destructive she was to our neighbors.

...the Healthcare Reform Act, for abolishing the heinous practice of coverage denial due to preexisting conditions.
the face of pre-existing condition

...the strength my partnership with Brett has been proven to have in the face of such adversity.

...every.single.SECOND I get with one Quinn Madeleine Linzer.

Eileen, Brett, Colin, Reid and Quinn

Monday, November 19, 2012

Quinn's List, ext

Quinn had a very busy weekend and I am so excited to share it! Gathering pictures now but in the meantime, she had quite a bit added to her List and I just have to mention the amazingly creative (and über generous!) list-specific items!!

Every girl should receive a gift in "a little blue box".
Quinn's heart necklace from Tiffany's, complete in that very special box :)
thank you aunt Kathy and uncle Kevin!!

Every little girl deserves to go to College.  And because Quinn is 'the best and the brightest', of course she would be Harvard bound!
most inventive gift received yesterday!  love it :)
thank you cousin Katelyn and cousin Erin

Every girl should have Designer clothes
yes, that does say Stella McCartney BABY.
my six month old has a Stella McCartney sweater - how awesome is that?!
thank you cousins Kathi, David & Trevor!

Every O'Gara granddaughter should have the Tiffany horseshoe necklace
Quinn is now one of the gals!
thank you aunt Michele, uncle Ricky, Richie, Katie, & Sean

Every kid should own a pair of Converse
and hot pink ones at that!
thank you cousin Erin!

Not every girl can say she punched a boy in the face (sorry Gabriel!)
*boom!*  Quinn's 'hello' for her friend Gabe, pic now framed with this note attached
thank you Allison, Dave, Charlie & (especially!) Gabriel

Every little girl should experience the passion of music and dance at the Nutcracker ballet
NYC Ballet, at Lincoln Center
thank you Al & Justin!

(and the pièce de résistance...)
Diamonds are a girl's best friend
"a little bling" read the card.  uh, not-so-little!!
thank you aunt Anne!!!!!
This also adds one new list item I was previously avoiding haha - every little girl should get her ears pierced.  The pediatrician will be called today for an appointment - let's get those babies in her ears ;)

We have the most amazing family and friends!!

Friday, November 16, 2012

Happy (half) Birthday, Quinn!

Six months ago today, Quinn Madeleine Linzer graced the world with her presence. 

Quinn, 6 days old

Half a year is a big milestone for any baby, but especially so for Quinn.  And we were so fortunate as to spend her milestone birthday with the one and only Nana Carney (and Nanny, and aunt Colleen, and uncle Gerry, and cousin Allison and cousin Billy - but really, Nana Carney).

Nana is my 91 year old grandmother who is a force to be reckoned with.  She still lives on her own down in Florida, and has a social life there that could rival any 22 year old (hell, she beats my entire 20's easily!).  The two ladies met for the first time today and oh my word, were they smitten kittens :)

look-a-me!  it's my (half) birthday!

no birthday is complete without a Carvel cake

Quinn and the queen mother herself (Nana Carney)

the boys with Nana last February

Today's celebration was bittersweet, though - for a few reasons.  

At six months, most children (or really, most parents) are looking forward to everything that is yet to come.  Sitting up on their own.  Crawling.  Walking.  Talking.  NPA children (or really, their parents) are now hypervigilant concerning every move - the developmental plateau will begin anywhere from six to eight months.

a mommy-quinny chat earlier in the day

And while today marks six months since her birth, it also marks exactly three months since her diagnosis - on August 16, 2012.  So Quinn has officially been 'the sick baby' as long as she was a well one.  Tomorrow, she will be 'sick' longer.

And worst of these is that while we were singing "Happy (half) birthday, dear Quinn-y", Sarah and Josh Brooks were preparing to lay their son Jake to rest.  Jacob Brooks passed away yesterday morning after a 2+ year battle with Niemann-Pick Disease, Type A/B.  Jake was a gorgeous little boy with two beautiful parents.  Sarah had reached out on a number of occasions, offering sound advice and support after we learned of Quinn's diagnosis, her words aiding us in some difficult decision making.

And now I cannot think of a single comforting thing to say to Sarah, or Josh.  My heart aches for them both and the only thing I can think to do right now is to ask our support system to keep them in their minds and their hearts as they navigate through this horrific experience, and to feel joy for them upon the (now imminent) arrival of Baby Girl Brooks - Sarah is due any day.

You can learn about Jake and his family on Sarah's blog - Joy of Jacob.

So, happy half birthday Quinn.  And peaceful journey, Jacob.  

Friday, November 9, 2012

Ain't nothin but a g-thang

Swallowing.  Seems like such a simple thing, right?  Unfortunately it is the thorn in Quinn's side and has been since the day she was born.  

She's had two swallow studies - one during her first round in the hospital for failure to thrive due to vomiting at 19-23 days of life and the second during our time at Duke.  Both showed direct aspiration with water-consistency liquids.  We have been thickening her feeds since 3 weeks old and that has definitely helped with the aspiration (prior to that she would literally choke down the bottle and promptly return it in exactly the same form, mere minutes - and sometimes seconds - later).  

What we haven't been able to control with any real precision is her vomiting.  Quinn completes her power hour (upright and stable for 60 minutes for each feed), come hell or dirty diaper and that helps, but it's in no way a guarantee and there doesn't seem to be any true pattern to when or why it comes back up.

Miss Q, less than 6 months old, holding her own bottle

As with any neurological disorder, swallowing and sucking will inevitably be a skill she will lose.  So that coupled with her existing issues - weight, indirect aspiration from the vomiting - have prompted us to consider
 a gastrostomy (or g-) tube coupled with a Nissen fundoplication sooner than later.

A G-tube is a tube that is placed in the stomach to deliver food and nutrition directly through the abdomen, bypassing the esophagus entirely (eliminating the possibility of direct aspiration from eating).  It's a fairly simple procedure.  The Nissen fundoplication is a bit more complicated (as the far more difficult-to-spell name implies!).  The lining of the stomach is used to effectively close off the esophagus at the entrance of the stomach, not allowing vomit to get through.  It comes with its own set of complications but it would all but cancel out the vomiting.

Both together require four scheduled nights in the hospital at the end of January - longer if any complications arise, of course.  Both together will offer Quinn a better quality of life - no more power hour, which she has come to despise; no more discomfort from the severe vomiting episodes; considerably less mucus and congestion since there should be considerably less vomiting.

Both together are an admission that this disease is going to win.  It's a 'giving-in' of sorts - acknowledgement that we are powerless against what is to come, even if it is only mildly here right now.  

Both together are our last shot.  Right now, this is the only intervention we envision taking for Quinn.  Because there is no treatment and there is no cure, there is nothing else really to be done - at least in our situation, for our family.  

That sucks.

We're going to have to explain to Colin and Reid why Quinny suddenly eats through her belly and not through her mouth.  Have to transport all of her equipment wherever we're going.  Have to alert the crew of the Disney cruise we're taking in March to 'do' Disney.  Have to teach her how to sleep on her back when all she's ever known is sleeping on her belly because of the swallowing / choking issue.

Have to admit that our baby girl really is terminally ill.

the three musketeers, celebrating the re-opening of our Super Target
- our home away from home

It's been a long week and this decision came on the heels of another major decision just a few days earlier.  The stress of Hurricane Sandy, immediately followed by a Nor'easter, Quinn's double ear infection, my sinus infection, juggling no school for the kids but work for mommy and daddy, major decisions surrounding the trajectory of our family's life for the foreseeable future, and now this.  

And it all seems to become too much -  until I see this face.
at Cohen's Children's Hospital, following her surgery consult

Then it's suddenly ok again.

Tuesday, November 6, 2012

Rock the Vote!

As a Political Science major and a dabbler in graduate school for International Relations, the first Tuesday in November is one of the most exciting days of the year for me.  (Yes - I am a nerd.)  This year was not only no exception, it was the epitome of election excitement.  

(In an effort to keep from becoming political - which these days is the equivalent of polarizing - I won't say who we voted for, just that this particular presidential election was extremely important to us in the Linzer household.)

Every American should vote.  It's something I feel incredibly strongly about and was one of the first List items I thought of for Quinn.  And despite rocking a double ear infection she got to rock the vote not once, but twice!

Quinn's not as good at keeping a secret

Quinn and the completed retro ballot

The one thing missing from our polls (besides 21st century voting methods!?) were the "I Voted!" stickers.  I posted a plea on FB and wow - what a response!  A number of FB friends said they would send us theirs, the first of whom were the Grumbachs in North Carolina (they even shared a picture so we could see it before it got here!).  Thanks Grumbachs!

After going to the polls tonight, we all got to participate in a Linzer family election, courtesy of Miss Amanda - thanks Amanda!!

our ballot box :)

Colin - and his oreos - casting his vote

Reid's turn!

Quinn got a helping hand from Daddy

the results are in!
3 votes for President Obama, 1 vote for Romney
and 1 write in candidate (player to be named later, apparently)

We are proud to be Americans!

Quinn's Ideawoman: mommy

Quinn's Wing(wo)men: mommy, daddy, Colin, Reid

Quinn's Benefactors: miss Amanda, the Grumbach family

Friday, November 2, 2012

Action Kids!

Right before Brett, Quinn and I left for Duke in early September I sat down with Colin and Reid to decide on Halloween costumes.  Because we were unsure of our decision on the SCT at the time, I did not know if I would be home with the boys for Halloween and it was super important to me to have at least a small part in their day of fun.

Surprise, surprise - the boys decided on superheroes. Colin picked IronMan, Reid SuperMan and they selected BatGirl for Quinn.  'Action Kids', as Colin calls the troublesome trio.  

Action Kids!  dressed for the town parade, Sunday before Halloween

cute Bat-Quinn

Well, none of us were home for Halloween.  Instead, we were seeking refuge in the warmth of my brother's house as he was the only one among us with power and the more important HEAT!  (And we were able to enjoy another of Quinn's List items while there - a sleep over at uncle Brian's house :) )

Long Island, along with the five boroughs and the Jersey shore, has been ravaged by Hurricane Sandy, which hit - and hit HARD - on Monday night well into Tuesday evening.

Homes, cars, businesses, lives have been irreparably damaged by this tremendous force that barreled through.  Friends and family have been displaced for months to come, their homes and cars miles from the nearest shoreline, flooded with sea water; entire towns merely blocks away from our home will inevitably be condemned.  There are gas shortages and no heat for millions, with temperatures dipping into the 30's at night.  

those cars didn't drive to those positions... they floated there

near our water treatment plant :(

It is devastating.  And it is a reminder.  A reminder that with all the good that people are doing for us, we have the opportunity to pay it forward, give something - anything - back.  

We were able to return home this evening, the news of our power restoration coming in when I was just a few blocks from our third destination in three nights, trying not to overstay our welcome with our large family of five invading other peoples' homes.  We enjoyed a (cool) evening at home - Quinn even gave a big grin as I laid her down for her first real nap in days in her own crib - with internet, cable and our own couch and beds.

But it's not over.  Staten Island, Breezy Point, the Rockaways - they're gone.  GONE.  And it is incomprehensible.  For anyone who is looking to help, texting REDCROSS to 90999 will donate $10 to the American Red Cross disaster relief fund.  And keep those who did not fare so well in your good thoughts.

Tomorrow each of us will be going through our toys, clothes, gadgets, foodstuff - everything - and parsing out what we can certainly live without and will bring it down for donation.  It doesn't feel like enough - it's NOT enough - but it's a start.  

Action Kids, take action!

Quinn's Idea(wo)men: Colin, Reid, Grandma

Quinn's Wingmen: Colin and Reid

sleep over at uncle Brian's
Quinn's Ideaman: uncle Brian

Quinn's Wing(wo)men: mommy, daddy, Colin, Reid, uncle Brian, aunt Maria, Maria, Brian