Baby Steps

Today I took Parker to his 18 month checkup.

EIGHTEEN. MONTHS.

EIIIIGGGHTTTTEEENNNN MOOOOOOOOOOOONTHS!

 *note to self, clean powdered sugar donut residue off carseat straps*

I am not entirely sure how this happened.  But it did.
His appointment went great- we were told we are far beyond "normal" in all categories.  He is THREE FEET TALL, which projects him to be way over 6 feet when he's grown, and 75th% for weight.  NICU whaaaaaaaaaat? She told us that we don't have to come back for 6 months.  This is exciting news for us!!

She asked us if we have been to visit any other doctors since our last visit, and for a second I couldn't remember when our last visits were... You see, we don't go to the doctor much anymore.  Why?

Because we got DISMISSED by Parker's surgeon.  As in, don't call us, we'll call you.

After Parker's CT angiogram over the summer, Dr. Parker informed us that the mysterious shadow/possible CCAM has completely resolved itself, his double patch is holding up beyond perfectly, and that barring some catastrophe, he probably will never see us again.  He'd like us to still get chest xrays every 6 months, send them to him for review, but he won't call us unless he needs to.

On our slip of paper that day, we were qualified as "NORMAL PEDIATRIC CARE ONLY."

It's hard for me to put into words exactly what that means for us, or for any CDH family.  Our surgeon has been our point person/overseer of Parker's care since before he was born.  And now he's turning us over to the normal baby doctor.  For good. I told Dr. Putnam today that I still spend a part of each day looking for things to worry about.  I filled out his developmental checklist today, fully expecting to have to bubble in "Not Yet" for many items. But that wasn't the case.  He scored at or above the normal range in everything... even fine motor skills, which have been a bit behind since the beginning.  We go back to the developmental clinic in December (we'll go once or twice a year 'til he's 5) for a full workup, but for now, nobody can find anything that is even remotely a concern.

And so, to celebrate, I did something that I couldn't bring myself to do for 2 years.

I bought Parker a baby book.

It's nothing fancy, it's nothing magical.  But it's a real big step forward for me.  When you spend half of your pregnancy planning a possible funeral for your unborn baby, baby books are just not anywhere in the scope of reality.  Even after he was born, I just couldn't do it-- as hopeful as we were, and as confident as we were in his medical care, there was just too much opportunity for the other shoe to drop.  Once we got sent home, I knew it was something I needed to get, but I always found a reason not to.  Now, it's time.  He's here to stay.  And he deserves a baby book, doggone it!

It's not that his life isn't well documented.  I will always have this blog as a chronicle of our Pnut adventures, and I am seriously considering getting the first year printed and bound for him.  I suppose it goes with the "normal baby" classification- he needs a normal baby book full of normal baby milestones, mixed in with a healthy dose of "you were never normal" milestones.

I have so much catching up to do- both in his baby book and on here.  So prepare to revisit our summertime adventures, beach trip, Halloween, etc.  In the meantime, as I take baby steps towards being a "normal baby mommy", please enjoy some of Parker's first "normal baby steps" from the last week of August.  *and Jeremiah's sliding skills*

Abby Files A Protest

This entire entry is dedicated to a group of gals on Facebook who were seeking my opinion on something.  I don't answer Disney questions in anything other than pages, so I had to house it here.

There's a home video of me, approximately aged 5, that my father lovingly titled "Abby Files A Protest."  It involves a Big Wheel race around my grandparents' culdesac, and some rather shady behavior by my same-aged cousin.  Despite what ANYONE ELSE said or saw, he was cutting corners in his efforts to beat me. That he is now an ordained minister should not sway you in who to believe here.  I have photographic evidence!  ;-)  The entire video is me trying, in dulcet tones, to explain why I had ACTUALLY WON the race, despite having careened off course and crashed into the back bumper of my Grandaddy's Lincoln Town Car.

Today, those same dulcet tones will be used to explain why I, who shares the position of Co-Captain of Team Disney or Die with my sister, am none to happy regarding their latest and "greatest" rollout in guest experiences.

Here's what arrived in our mailbox today.

HOORAY!  We're heading down in a month or so, to celebrate Jeremiah's birthday and early Christmas.  As a result of being booked to stay on property, we have been selected to be part of the test market for Magic Bands.

These are my sister's Magic Bands for her upcoming trip.  Aren't they cute and fun?!? The short version is that instead of having a plastic key card housing your room key, credit charges, and park tickets, you now have this nifty wristband.  They have microchips in them that require a simple touch to a sensor to read, and you're good to go.  I can get behind that-- they're waterproof, less likely to get misplaced, and you can get a pink one! I can see it eventually morphing into a child location device, like on the cruise ships... These things could be great!

What I can NOT get behind is the attached Fast Pass Plus system.  Currently, you can use your plastic key card to get FastPasses for various attractions, assigning you a time later that day to return and "skip the line" (read: stand in a sometimes shorter, sometimes not line).  There are a few limits on it to keep the crowds flowing around the park- you can't get more than one within a certain time period, and often times there will be such a demand for them they will run out of FastPasses for very popular rides early in the day.

Fast Pass Plus gives you the opportunity to make appointments for attractions in advance.  How far in advance remains to be seen, as it's still in the testing stages, but I got my info on it today, and my vacay starts in 40 days.  The appeal here, on the surface, is that I can now have the ability to know when, precisely, my family will be riding/experiencing certain attractions in the parks.

Let me be clear here- I am not co-captain of Team DoD for nothing.  I love to plan my park days, and we have a system down to a T that enables us, if necessary, to blow through all 4 parks, riding all of our favorite rides, in approximately a day and a half.  I know how to manipulate the system to make it work for us, and perhaps that knowledge will come in time with this new system, but for now there are some MAJOR RED FLAGS A-WAVING.  Pour yourself a cup of tea and let's chat:

1) The greatest "draw" of this plan is also it's greatest flaw.

Being able to plan out your ride times 6 months in advance (which sounds ludicrous, but is the current standard opening window for dining reservations. It would not surprise me in the least if ride reservations went the same way within a year or so)  sounds fantastic.  How exciting to know that you'll be able to skip the standby line for the big rides, and to be able to plan your park days accordingly!  "Once in a lifetime" Disney trippers get a huge benefit from this-- it takes away much of the overwhelming stress newbies can feel when standing in the parks for the first time and having no idea what to do with themselves.

Except it doesn't.  It just moves that stress to 6 months earlier, on top of converting Newbie Disney Mom into a clipboard toting Drill Sargeant.  To effectively plan your rides in advance, you need a good working knowledge of how far it is from one ride to another, which rides are worth using up a reservation slot for and which aren't, as well as outside factors individual to your family, such as what times your kids like to rest or eat.  Once those time slots are booked, Newbie Disney Mom has joined the ranks of the women shrieking at their children "I DON'T CARE IF YOU ARE TIRED OR HUNGRY OR WANT TO SEE MICKEY MOUSE!  WE HAVE 14 MINUTES TO MAKE IT TO TOMORROWLAND AND WE ARE GOING TO HAVE FUN, DAMMIT!"

Because, if you don't make it to Tomorrowland in 14 minutes....

2) You're screwed if you miss it.
This from the Disney Webpage:
"We understand that there are many unexpected situations that may arise and cause you to miss your FastPass+ attraction arrival window time—but don’t worry! If your plans change while at the park and FastPass+ experiences are still available (emphasis mine), you can modify your selections online with your mobile phone or at a FastPass+ kiosk.
Please try to make changes to your FastPass+ experience before the start of your arrival window time. If you miss your time due to circumstances beyond your control, please speak to the Cast Members at the attraction.
While you may lose the opportunity to use an attraction’s FastPass+ entrance if you miss your arrival window time, all operating attractions still provide a standby queue where you can wait to enjoy the attraction."

Guess what.  Little Johnny just had a blowout and  is leaking poop onto your rented stroller. There aren't enough wipes in the diaper bag, and you have to go back to hotel to hose him (and you) off.  You're going to miss your Space Mountain time.
Per the Disney Webpage- while you are dragging poor soiled Johnny by one arm down Main Street, you should also have your phone out, frantically trying to find another open reservation time for Space Mountain. Otherwise, you just bought yourself a 120 minute standby wait after you wash the poo out of your hair.  Or, if one pays attention to the print up there, you just scored the only available reservation left for that day ('cause ClipBoard Mom from #1 booked all the good ones 6 months ago)- FastPass Plus for Winnie the Pooh!  Your teenager will be thrilled!

With the old FastPass system, if you missed your time, it was sad.  But, it was easy to take solace in the knowledge that you could, with a few exceptions like Soarin' or Toy Story, get another one for that ride, though probably much later in the day.  And in the meantime, you could fill up your wait time by FastPassing other rides.

Except now....

3) Three shall be the number thou shalt count.
Yep.  Three reservation slots per day is the current standard,with some people (usually those booked on low attendance days) reporting "surprise" opportunities to book a fourth, and being given a "freebie" in the pre-selected form of Haunted Mansion or Pirates of the Caribbean, neither or which I have ever, in more than 20 trips, waited more than 25 minutes for on standby line.  Not really a great "free surprise!", but it looks that way on paper.

The rub here is that with the old system, we have had park days where we were able to use up to 8 or even 10 FastPasses in one day, sometimes for the same ride multiple times.
With this new system, you get one go on a ride per day before you are relegated to the standby line, and you are limited to 3 "experiences", which might be rides, or shows, or reserved parade/fireworks viewing per day.  AND THEY MUST ALL BE IN THE SAME PARK.

Oh yes, not only are you limited to three FastPasses per day, you are also limited to keeping them within one park for that day.  Park-hopping, under this system, has lost much of its appeal.  The Disney Dream of hitting all 4 mountains in one day (Space, Splash, Thunder, and Everest) has died- as doing so without FastPass use is almost impossible.

This isn't a big deal to people who are there for 10 days, and spend 2 or 3 days at each park.  It is, however,  a big honking deal to people like me, who fall into this category...

4) Last minute trippers, i.e. repeat customer$$$$$, are getting a real short stick here.

With our DVC points and our no-expiration tickets, or Sister's family with their annual passes, it is so easy for us to say "Hey, let's jaunt down for the weekend.  We already have tickets and a room, we'll just have to pay for gas and food."  Doing so meant that we had to forsake almost all chances at sit-down restaurants, as those book up at the 6 month out window, but that's never a big deal. 
Now, however, we will have to factor in that the FastPass Plus reservations have significantly decreased the number of FastPasses available for other guests who don't have the armband reservations already made.  Sure, we can hop on the app (OF COURSE there is an app!  We'll revisit this in #5) as we are hurtling southbound, and see what's open, but if the experience in trying to get a last minute dinner reservation is any indication, that won't go well.

Other people getting royally screwed include people who are staying off property, people who buy tickets from other retailers than Disney (Undercover Tourist represent!!!), and people who live locally in Florida and have annual passes.  They won't have the ability to make any advance ride reservations at all, being only able to use the old FastPass machines (which are being phased out as we speak, with only 1 of 6 available machines at Rockin Rollercoaster being in operation) to get what few actual passes remain after the advanced reservation people have made their choices.  I can actually see the logic here from Disney's standpoint, as those other people aren't giving them enough money to be entitled to a premium guest experience.

Ooooooohhhhhhhhhhhhhhhh-- did you read that sentence carefully?  'Cause I am enough of a conspiracy theorist to know that this could very likely be Step One in the march towards Paid FastPasses-- anybody who is willing to pay a little extra can get extra FastPasses added on.  Just ask Universal Studios down the road-- it works like a champ for them and I can almost smell it landing on Main Street within five years. 

And finally... 

5)  It feeds into one of my biggest personal pet peeves:

PUT. DOWN. YOUR. FLIPPIN. PHONE.

It saddens me, every day, the frequency with which I see kids at restaurants with ipads while their parents are checking Facebook and dribbling cheese dip in the process.  Lots of the concerns people have raised with this program have been answered by Disney with "With our new wifi park wide, you'll be able to get constant updates if something affects your reservations, and you'll be able to modify your choices from your device."

Super.  Now Clipboard Mom from #1 is frantically checking her phone, making sure there's no magical email from Mickey telling her to show up at 2:45 instead of 2:14.  YAY VACATION!!!!!!!!!!!!

So many people are going to love this business, and I might love it in time.  I might not have a choice, as this "testing phase" that we have been asked to be part of is the last step of a full rollout. Right now, being part of the test group is GREAT because, as late as last week, people were able to double dip and use their new wristband reservations ON TOP OF their traditional room keys to get extra FastPasses the old way.  Disney doesn't leave loopholes open for long, so I'm not counting on that for our trip in December or when we go back for the marathon.  Even if that loophole were going to be there, I wouldn't use it. I'm protesting out of principle and my general disdain for this silliness.

I embrace innovation. I like advancements.  I celebrate the Carousel of Progress and all that it represents.  I just remain unconvinced that this plan, in its current form, is a good one.  Two years from now, I will probably be happily waving my pink armband in the air, all its virtues to espouse to anyone who will listen.  But until someone holds me captive and shoves that wristband on my arm, I'm giving Mickey a big

THANKS BUT NO THANKS, AND HAVE A MAGICAL DAY. :-)

(Half) Marathon Monday

82 Days 'Til the Disney Marathon!

*hyperventilation and despair*

Yesterday, Hubs and I "ran" the Athens Half Marathon with his brother Jimmy.  It was not fast, it was not pretty, but we did it.

The course yesterday was AMAZING.  Not too much in the way of uphills or downhills, no tedious down and backs, and a great reminder of why I will always love this town.

We started the morning with a quick worship service at First Presbyterian Church of Athens.  So wonderful of them to open their doors- providing hot coffee, a warm place to stretch, and a peaceful time of prayer and singing before the start.  After that, it was a quick walk to the start and then we were off!

The course ran through so many beautiful old historic neighborhoods in Athens.  (Hubs spent most of last night looking up real estate listings in Cobbham, our favorite little section. Alas, until we hit the lotto, it is not meant to be!)  People lined almost every street, waving hilarious signs ("Our government can't run, but you can!"  "Worst parade ever!  Where are the floats?") and offering oranges and high fives.  It is impossible to put into words how much spectator support can mean while running! We wound our way down sorority/fraternity row (real quiet that early on a Sunday morning!), through Memorial Park (the only really hilly part of it all), and past my old apartment.  Milledge Place represent!

We made our way back to campus, finishing up with a victory lap around the field of Sanford Stadium, waving at ourselves on the JumboTron.  A quick sprint to the finish, and we were done!  *we actually crossed the finish twice-- this was Jimmy's first race, and he had hit the proverbial wall, so we jumped back on the course and cheered him to the end.  So proud of him!*

My goal was 2:30- there was a man with a little sign leading a pace group for that time, and I tried to keep him in my sights.  I lost him at one of the water stops, and never found him again.  I did know, however, that I would at all costs stay in front of the 2:45 sign lady.  And in front of the one I termed "Smelly Man", who left such a cloud of BO in his wake that it was hard to breathe.  *shudder*

I wanted to finish at that time so I could send a good qualifier to RunDisney-- hoping to escape the last corral and move up even one, so that I can build as much of a head start as possible before the Van of Shame starts rolling after the last starter leaves.  I THINK my time will get me out of the last corral, which will give me a few precious minutes.  Every second of padding I can get, I will take.  That marathon will be more of a mental game than a physical one, especially for someone like me who is about as far from an "elite endurance athlete" as you can get.

While I didn't make my goal, I was close. I took 28 minutes off my best half marathon time (35 minutes off my first one), and finished at 2:40 by their clock, 2:38 by mine.  That comes out to a little more than a 12 minute mile, which is not fast.  For lots of people, that's barely moving.  For me, however, it felt great!

I am not a distance runner.  I take liberal walking breaks. But I go.  And go and go and go.

Training runs are getting up to the 20 mile mark soon, and the race date approaches.  The run yesterday was a pretty easy one, and I didn't push it as hard as I could have at some points.  My music player battery died at mile 12 (SERIOUSLY?!?!?) and that made the last stretch much harder. My ankles were a little sore yesterday, but I feel fine today. Still, the concept of what was the finish line yesterday being the halfway point in January is a little daunting.  Or completely terrifying.

Nothing to do but keep moving.  Past the smelly man, past self doubt and worry, and onto a finish with a high five from Mickey.

Comin' for you, Mouse.

On the Subject of Miracles, 2.0

I have gotten approximately 15 "WE NEED A PARKER UPDATE!" emails in the last few weeks.  I so much love that people are invested in his little story and our little family.  I have so much to get caught up on-- our beach trip, marathon training, and big news on the Parker front (all good!).  Must. Get. Better. About. Posting.  But I do thank those who you who check in on us.  I apologize for my absence, but in all honesty, we have been SO BUSY around here, by the time it's time for updating the blog, I am facedown on the sofa watching mind-numbing reality shows until I wake up drooling on the cushions.

HOWEVER, I couldn't let today pass unnoticed.

Sweet Rose, aka Jude's mommy, and one of the first ladies who reached out to us after Parker's diagnosis, organized a little get together today for some CDH babies who live not too far from each other.  I was so excited to go, to finally get to love on these babies who beat the CDH monster and to hug the necks of the women who understood our journey better than anyone and who stood by our sides through thick and thin.  I've often referred to them as "imaginary" friends, because I feel like I know them, but would walk right past them in the grocery store.

Today we finally got to meet, and it was a grand and glorious time-- all of our families (minus just a few) in a beautiful park on a perfect fall day.  Hearts full to bursting.

Lily, Bonnie, Clara, Parker, and Jude (in the back)

**picture courtesy of the Hardys**

It's hard to look at that picture and not be amazed, knowing their stories, and knowing the struggles they have all faced. 5 wee ones, with something like 18 months' NICU time between them.  5 strong and healthy babies who all, at various times, were far too close to dying.  5 little people who, for all intents and purposes, are living "normal" lives doing what "normal" babies do.

5 miracles.

I mentioned it before, but I think it's worth mentioning again, the miracle isn't that these babies survived.  Or even that they were born.  The miracle is that they were formed, albeit imperfectly... Imperfect by human standards, but designed exactly the way God intended them to be. 

Looking at those faces above, I think you'd be hard pressed to find any of us who'd change a thing!

Scary Stuff Intermingled with Hilarity

Monday, we took Parker back to Egleston for his CT-Angiogram.  Going into it, I didn't know too terribly much about how it would go, only that it involved injecting dye via an IV, then him "shooting through the tube", as it were.  Having had a regular CT scan myself, hooray kidney stones, I knew it wouldn't take too terribly long and that he would need to remain still, which would probably involve giving him some twilight drugs and strapping him down.

Wrong.

Mike and I were NOT PREPARED for the several hour ordeal that it turned out to be.   It became clear pretty quickly that they were planning to put him all the way under for the duration of the scan, which is a lot easier said than done for a kid with Parker's history.  We had to watch the informative videos about sedation and contrast injections, which do a great job of outlining the worst case scenario in which your child will die instantly during a routine exam.  We weren't too bothered by those, 'cause we've been around the block a few times and have heard the worst case scenario more times than I can count.

I did start to get freaked out when the anesthesiologist came in and ran through the extra risks Parker faces during sedation that normal kids don't.  He has a compromised respiratory system, which increases the likelihood that he won't be able to breathe on his own through sedation and will require bagging or even intubation.  He has a history of both tachycardia and hypertension (although resolved long ago), and injecting him with propofol could throw his heart into cardiac arrest.  "Propofol?  Like, Michael Jackson overdose Propofol???"
Indeed.
They first had to give Parker an airway exam, and contemplated a chest x-ray, before they would even consent to sedate him. They were all very kind and very sweet and explained everything very well, but it was just much more involved than Mike and I were prepared for.

They let us hold him until the propofol hit, which took all of 30 seconds. He went completely limp, and my mind immediately went back to the first month of his life, when he was medically paralyzed-- it looked the same.  Floppy baby, mouth hanging open, eyes rolled back, just awful.

They ushered us out pretty quickly and had us wait in the recovery room.  "Three minutes!" they said.  It took more like twelve, and I tried so very hard not to panic.  I was so easy breezy headed in there, but all of the "we aren't sure he's even a candidate for sedation" talk had me on edge, to say the least.

They finally wheeled him back in, and they said, "Since it's his naptime, he might sleep for a bit... Oh-- no-- here he comes!"  Sweet Pnut, who burns through IV narcotics like they are KoolAid, woke up almost instantly. Well, sort of. He spent a good five or six minutes singing at the TOP. OF. HIS. LUNGS.  Our sweet nurse was trying to give us discharge instructions but was constantly interrupted by

"AAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHBAHDAHBAHDAHBAH!"

"If you notice that he seems sluggish...

"DAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAADADADADADADA!"

"We'll keep you here until he eats..."

"MAAAAAAAAAAAAAAAAAAABABABABABABAABAAH!"

Eyes completely closed, rolled on his side, singing his heart out.  I tried so hard not to laugh, but the entire radiology department was giggling.  Poor booger.

He finally came out of it enough to eat some graham crackers and drink some juice, which meant we were free to go.

A wee bit stoned, but at least he's mellow.

We got the heck out of dodge, and of course had donuts on the way home.  We hope to hear nothing until our surgeon appointment August 8th.  If he calls before then, it's because he found something to be concerned about.  No thanks!

Yesterday we took the minions to see Despicable Me 2, which was adorable.  Jeremiah loves to go to the movies, and Parker did great for his first trip.

Today, I took Jeremiah to get fitted for his ringbearer's tuxedo for Cousin John's wedding in October.  The salespeople made quite a fuss over him, and he ate it up with a spoon.  He loves to dress up, be it in costumes or "handsome clothes", and he is so excited.  The shiny shoes were his favorite part.

Sweet boy.  Being a fashion plate can be exhausting.

Fun for the Fourth!

I have always loved Independence Day.  All that it means... all that the celebrations entail... it's just good times.  Most of my memories of July 4ths gone by revolve around 2 things:  ribs and fireworks.

Our very dear family friends, the Jenkinses, always had both.  We spent countless July 4ths with them, and I was thrilled thrilled thrilled to have them join us at our cabin at Lake Rabun this year.  They moved away many years ago, but they will forever hold a special place in our hearts.

The Grillmaster.  Nobody does it better. I am not embarrassed to say that I consumed somewhat obscene amounts of pork products Thursday, nor am I ashamed to admit that I have been visiting my refrigerator in the dead of night to nibble on leftovers.

Love love love love that we got to spend time with old friends this year!

Our trip to the lake was somewhat hindered by the near-constant rain, but we got to spend time with many of our favorite people, light sparklers to substitute for the rescheduled lake display, and be grateful to enjoy the freedoms that we do.

I even got to pressure wash the boathouse with my daddy, despite everyone mocking me for doing so in my sparkly jeans.  Whatevs. :-)

I really was expecting to spend more time thinking "This time last year, we were _________."  But, somehow, I haven't been dwelling on the past as much as I imagined I would.  The anniversary of Parker's near death hemorrhage came and went.  Repair surgery anniversary came and went.  Extubation came and went... I have been so busy sucking up every last minute of my boys that I just forget to think back to darker times.  But the 4th of July week sticks out in my mind.  Parker was finally out of the critical NICU, and we were on the road home.  And then he had a really, really, really bad day.  His IVs went back in. His oxygen got cranked back up to the maximum amount.   It all turned out to be due to faulty respiratory equipment, but it was a huge setback that led to a MAJOR meltdown for me.  We were headed to a 4th of July themed party, and sweet Mike sent me a text from the hospital:  "All ready for the party, mom!"

And I just LOST IT.  I was foul that my baby wasn't home yet, I was foul that the equipment had messed up, and I was foul that I was the one who had to figure out what the problem was.  It was NOT. GOOD. TIMES.  We spent our Independence Days as a broken family, and all I could do was hold onto hope that we would be together for the next one.

And we were.

Medical Updates and Cuteness

My favorite thing is when I get "gentle" nudges in person or via email that I haven't updated the old blog in a while.  My response is always the same-- "I have two boys to chase around!", which is part of the reason.  The other part of the reason is that summertime is synonymous with RIDICULOUS tv programming, and perhaps, PERHAPS I have gotten sucked into such mind-numbing IQ consumers as "Pretty Wicked Moms."  After the boys go down for the night, I spend my evenings doing foolish craft projects and rolling my eyes at the TV while not being able to turn away.  The time I could be using to update this page is spent listening to such witticisms as "I had a c-section because I was too posh to push" and "My face is so thin. I am so evaporated."

No shame.  Shoot your barbs of judgment at me. I can handle it.

In actual worthwhile news, the 12 month mark for Parker meant it was time to run the gauntlet of doctors appointments yet again.  Here is the rundown:

Pediatrician:
12 month well check was perfect.  24 lbs, 32. 25 inches tall.  Nothing to report.  Always happy to have a "normal" visit.

Developmental Clinic 
Saw the psychologist and PT/OT.  The psychologist ran him through a good hour of cognitive testing, which was the most fascinating thing to see.  She had an enormous suitcase of toys and objects that she put in front of him to see how he responded.
Could he get the Hot Wheels car out from under a clear box?  Could he put the cheerios into a pill bottle?  Could he screw off the top of a pill bottle? (YES HE CAN, which is good to know in the "holy goodness, let's recheck the babyproofing" arena)  Could he find the pretty pink bracelet under a blanket?  Could he turn the pages of a book?
Yes yes yes yes yes.  Mommy starts to puff up with pride about Genius Baby in her lap. 
Could he point to the dog in the book?
no
Could he point to his ears?
no
Could he build a tower at least 5 blocks tall without knocking it over?
no
Could he say puppy?  Could he say cow?  What does a cow say?
Silence.
Mommy now starts to deflate and plan early intervention strategies.

"Well!  He did AMAZINGLY GREAT!" says the doctor.  Upon seeing my puzzlement, she laughs and says that they keep going with the test until the baby hits the plateau and stops performing. Vague memories from my EdPsych classes in college emerge.  She transfers the results to a score sheet and Parker perfectly in line for a normal 12 month old, with many skills in the 18 month range (particularly in social development, self help, and cognitive skills).

BOOM!

So very pleased.
PT/OT results were that he has caught up in gross motor, which was his area of weakness at 9 months.  Fine motor is at the low end of normal, and they wrote a script for an OT consult just to see if there needs to be any intervention.
They also wrote a script for speech because he is a mouth breather.  My pediatrician and I both felt that was a little bit strange-- of course he's a mouth breather... homefry is working with a lot less lungs than the rest of us. He babbles, he has many consonant sounds, he mimics voice intonations, he eats everything in sight, etc. etc. etc. I might go for the consult just to see what they say, but the ped said to remember that the developmental people only see him infrequently, it's different doctors every time, and that in general they tend to fall on the "overly cautious" end of the spectrum.
Have to think on that one for a bit-- our insurance won't cover speech at all (DO NOT GET ME STARTED ON THAT SOAPBOX) and our deductible just rolled over as of today.  Joys and thrills.

Audiologist
It's funny to hear, throughout my CDH community, how widely the follow-up treatments vary.  Lots of surgeons and pediatricians send these babies to every specialist under the sun for the first few years, while others wait to make referrals until the need arises.  Both Dr. Parker and Dr. Putnam are on the "we'll let you know if you need to go" side of things when it comes to pulmonology and cardiology, but Dr. Putnam is completely on board with pre-emptive strikes when it comes to hearing.  For some unknown reason, CDH babies are at SIGNIFICANTLY higher risk of late-onset hearing loss than most kids, and also higher than other kids who were on ECMO for different reasons.  The primary culprit is medication, particularly Lasix (which Parker was on for MANY weeks to reduce the swelling in his body).  The hearing loss for ECMO kids tends to manifest several years into life, with most showing absolutely no sign of loss until average age 5.  Some kids start as early as 3 or as late as 8.  Regardless, Dr. Putnam feels strongly that hearing checks at least yearly (probably twice yearly) for the forseeable future are a good idea.
I'm down with that.
We went Friday, and Parker passed with flying colors.  Totally fascinating to watch that testing as well-- they put an earbud into each ear and sent sound through, measuring the vibrations of different parts of the ear.  We then went into a soundproof room and listened for voices, rumbles, and hisses to come from all around us.  When he looked the correct way, he got to watch a little cartoon. 
Maybe I got to play too, since I was holding him in my lap.

Hooray for perfectly normal hearing!

Next up, a week from today, is a CAT scan to check blood flow in his chest.  This is in response to the dark mass that plagued his early chest x-rays, but got fainter and fainter as time went by.  It wasn't visible at all on the 9 month film, which is encouraging, but Dr. Parker wants to run this test to be sure that nothing is hiding in there that needs to be surgically removed.
Send a prayer for us on Monday-- Parker has to have an IV put in and the test itself might take up to an hour of him being strapped in and grouchy.
HOPEFULLY after that, we will be free to resume our normal schedule of summer time fun.
And trashy TV.

And now, almost 2 months later (who's the BEST MOM EVER?  *crickets*) please enjoy Parker's one year portraits taken by my aunt Nesie.  Any and all comments about his silly hat and girly outfit (you know who you are!) can be put into the comment box.  It's coincidence that the comment box looks like the garbage can. :-)

TO THE COMMENT BOX, YOU!

A Dozen

I sort of disappeared for a month... sorry.  I had a garage sale, and then went to Disney World (that post is in progress), and then celebrated a kind of big deal around here.

PARKER'S FIRST BIRTHDAY!!!!!!!!!!
Twelve months.
A dozen donuts.  (or maybe more.  Just sayin')

I just can't even begin to describe the emotions of it all.  I spent the entire day Friday thinking back to a year ago... being hugely pregnant and completely terrified.  Every moment that Parker was in my belly, he was safe.  With the very first breath he took, everything would change.  We knew nothing except that it was out of our hands.

I so clearly remember laying on the operating table and whispering "Please, Jesus, be with us. Please, Jesus, be with us..." the entire time.  Pools of tears were collecting in my ears, Mike was completely silent and rubbing my hand, and the anesthesia tech kept asking, "Are you okay?  Are you in pain? Why are you crying?"

My only answer was, "He has to be okay.  He has to be okay.  Please make him okay."

And he is.

 

 

It's been a year, let's just leave it at that.  I have a few more gray hairs (as if I needed THOSE, thankyousomuch) and a much deeper appreciation for the miracle of life, but we made it.

Time to celebrate!

 

Our Donut Stop Believin' theme was SO. MUCH. FUN.  The party was at 10:30, so I did light brunch type items.  The park had a track to run on and a playground for the kids, so I brought balls and sidewalk chalk and it worked out great.  It was pretty low key, and it was a fantastic celebration with many many people we love very much.

 

Donut cupcakes and smash cake

 

 These two signs pretty much sum up the last year for us.

 

 Everybody got donut holes to take home.

 Abby by the coffee pot.  Because we are never far from one another.

And yes, that is my ParkerPoof from the Color Run.  

It was POURING Friday night, and as this was the first outdoor party I had ever thrown, I was dying.  Control freaks ought not to be allowed to plan outdoor parties.  I knew enough to not even entertain the notion of an outdoor wedding, for the good of everyone around me.  Still, Jeremiah's birthday is in December, and he always gets stuck with indoor parties. I wanted to do Parker's outside, and thankfully the weather cooperated!  We had beautiful weather for the entire party, and then a monsoon ensued that evening.  Perfect for the Donut Dash!

So. Many. Donuts.

The "official" challenge was one mile, eating four donuts along the way.  I made a rule that if you puked, you were DQ'ed.  Thankfully that wasn't an issue! The officially official winner is Mr. Matt, runner extraordinaire and eating enthusiast.  

 EVERYONE got a medal, whether they did one lap or five, whether they ate one donut or twenty.

 I made the medals by melting down candles, pouring them into a donut mold, cooling, then dipping them in colored wax and sprinkles.  I think they came out adorable! (I will confess, however, that by medal #60  I was questioning my sanity. Still, crafts make me happy, and this was crafts with a cause!)



 Parker DESTROYED his cake.  He didn't eat much of it, but proceeded to fingerpaint himself and his surroundings quite nicely.  He had a ball, couldn't have been any happier, and rode home naked.

It was a special day for our family.  We shed some tears, to be sure, but mostly we were overcome by the love we felt from so many, and the joy they shared with us.And because they are tremendously fantastic people, I will be mailing the more than $500 we collected in lieu of gifts to Children's Healthcare of Atlanta this week.  Love love love.

We came home and literally flopped on the floor.  And my heart was full to bursting with gratitude for the gifts God has given me.

Donut Stop Believin'

How is it even time for this???????  HOW IS MY SWEET BABY BOY ABOUT TO TURN ONE???

I just don't really know what to say about it, except that I am terribly terribly excited (and also tremendously sad.  Let's be real.)

Our plan for his birthday this year is to gather with his biggest supporters, eat obscene amounts of donuts, and celebrate a life that might not have been.

We might sing a little Journey, as the title of this post suggests.

There will ALSO be, for the intrepid souls brave enough, a one mile Donut Dash-- 5 laps, 4 donut pit stops along the way, and a pretty sweet donut medal for those who cross the finish line.  So much silliness and so much fun!

I was going to send out an Evite, but it occurred to me that there are many people who have been our biggest supporters for whom I do not have an email address.  If you are able to join us that day, send me an email or a Facebook message and I will give you the details.

Less than a month! Inconceivable!

And yet, two very important things coming up before that:

1) THE GARAGE SALE FROM HADES.  It has consumed my life for the last month.  Something bit me and I decided I needed to get rid of 4000 pounds of junk from our house.  And my dad's house.  And my sister's house.

It all goes down this weekend.  I am not sure we will survive. But if we do, we are taking our hard-earned dollars and spending them all in...

2) DISNEY WORLD!!!!!!!!  One week.  Cannot wait.

Run for Boston

There just aren't words to describe my feelings about the marathon bombing yesterday. Shock.  Rage.  Grief.  Etc. The stories that are emerging are devastating. The feeling of helplessness is heavy on everyone.  Frustration is growing as we are trying so hard to find a name and a face to hold accountable, because a known enemy is much less scary.

But mixed with that are the stories of light and hope-- the first responders, the good Samaritans, the blood donations, the outpouring of love and support from across the country.

I saw several things floating around Facebook to show support for the runners-- wear a race shirt, or wear blue and yellow as those are the Boston Marathon colors.  Go for a run, and use that time to reflect on those who are now unable to run. 

Hubs is in training ALL WEEK.  His days are long and tiring.  It's basically me and the boys this week, which is more than fine, but means that my opportunities for running are somewhat hampered.  But I wanted to get out there today.  I felt like I HAD to.

Why?  Why not do something "productive" like donate blood or send money?  Who is it going to help to put on a shirt and go jog in a circle?  All valid questions.

And to that, I say this: Allowing fear to keep you from doing something you love is letting the bad guys win.

I'm training for my first marathon, and I am prepared for it to be the hardest thing (physically at least) I have ever done.  I know the feeling of accomplishment I have gotten from finishing shorter races, and I am so looking forward to the exhilaration of crossing a marathon finish line.   And I just simply cannot fathom having that moment turn into the horror from yesterday.  But I'm not going to let fear deter me.  I'm not going to roll into Orlando in January waiting for the worst to happen.  I'm going to keep running, and I joined thousands of others today who KEPT RUNNING.

Running to make a statement, not to anybody in particular but more to themselves, that whatever motives were in place for the attack won't break our spirits.
Running to remind ourselves to count our blessings.
Using the run time to pray for the victims, the families, and the entire city.  The country.

This whole messed up world.

And that's just what I did.  I loaded up all 70 pounds of two boys (dressed in yellow and blue) into my double jogger, put on my most recent race shirt, and ran 2.62 miles.  I ran and I prayed.

Many people ran in silence today, but I went with David Crowder in my ear.  A fellow CDH mama, Rhonda, sent me a CD of music she and her husband compiled while Esther fought a good fight.  They lost Esther 2 weeks before Parker was born, and I can't tell you what a lifeline that CD was for me. It still is.  On it is a song called "Oh Great God, Give Us Rest."  It was perfect for today.

Oh great God give us rest
We're all worn thin from all of this
At the end of our hope with nothing left
Oh great God give us rest

Oh great God do your best
Have you seen this place it's all a mess
And I've done my part too well I guess
Oh great God do your best

Could you take a song and make it thine
From a crooked heart twisted up like mine
Would you open up Heaven's glory light
Shine on in and give these dead bones life
Oh shine on in and give these dead bones life

Let it shine, let it shine
On and on, on and on, come to life

Life Behind the Thin Blue Line

I'm going to clue you in on something that I rarely, if ever, talk about.  To anyone. 'Cause it's easier that way.

There's a real big elephant that walks around our house every day, and that elephant's name is Fear.  His presence is often palpable. He lurks in the corners most of the daylight hours, preferring night time visits.  He flashes across the TV screen far too frequently and once he straight up rang my doorbell.  Just 2 hours ago he sashayed straight into the kitchen and sat on our chests.

My husband is a police officer.  And tonight, an officer from his department was shot in the stomach 2 hours after Mike left work.  Enter the elephant.

Mike decided to take this path in life while we were in college, and most of us found it somewhat strange as he looked like this at the time:

*now take a minute and enjoy that, and then mentally add on a pair of GIGANTIC HUGE SKATEBOARDER PANTS AND AIRWALKS.  Y'all.  There aren't words.*

But he meant it.  His grandfather, his hero, was NYPD.  Throughout his college years, he interned with the Athens PD and went straight into the academy after graduation.  By that point, we were "maybe dating" after 4 years of friendship and I had to start thinking about if the life of a police wife was for me.

Thankfully, I have an excellent role model.  My sister is also a police wife and mother of 2.  She has a 7 year head start on me, and I have watched and learned from the struggles their family has faced.  She told me often, "You aren't just marrying the man, you are marrying the job."  And it is so very true.  To separate the two is impossible.

Life as a police wife means, among other things:
-Having Christmas morning at 11:00 at night so he can see the kids' faces
-Sitting in restaurants alone, waiting for him to be cleared for a 20 minute meal break
-Sitting in restaurants alone with 2 entrees because his 20 minute meal break was cut short by a call
-Being schooled to sit in said restaurants so that he always is facing the door, even when he's off duty
-Family Fun Day being interrupted as he runs head on into traffic to help victims in a car accident that happened on our way to the park
-Trying to support his 230 lbs while he clings to me, weeping, after seeing the worst sides of mankind
-Having to switch gyms because too many people he's arrested attend ours and he feels that his wife and children are endangered
-Having plans in place for what to do in such endangered situations
-Knowing deep within my soul that if something were to go down, in a movie theater for instance, that my husband would kiss my cheek, tell me to stay down, and run straight at it

 I don't know who created this, but it couldn't be any more accurate!

I spent a lot of our newlywed time staring at the phone while he was on shift, waiting for it to ring with bad news.  I lived in fear of the doorbell, knowing that the day I open it to uniformed officers is they day I am widowed.  But I couldn't stay there.  Just couldn't.  It's exhausting and it's non-productive.  So I have adopted the "pray and press on" mindset... Pray as hard as you can every single day, and then press on knowing that it's out of your hands.  Keep the elephant away at all costs. Or at least try.

But as I said, he sneaks in when you aren't expecting it.  One day, home alone, I heard the doorbell and peeked through the curtains to see who it was.  All I saw was the sleeve of a uniform with an Alpharetta patch on it.  In an instant, I was on the verge of blacking out and barely able to open the door.  It took me 2.7 seconds to process that it was a fellow officer who lives nearby, coming by to drop off something he had borrowed.  But that 2.7 seconds was a reminder that the fear never leaves.  As busy as we stay and as blissfully ignorant as we pretend to be, it lurks. 

Tonight I watched Mike, as the confusion and misinformation about this evening's shooting swirled, knowing that he is every bit as aware as I am that it could have been him.  It would be an outright lie to say that he's not afraid of never coming home. However, he doesn't let the fear follow him to work. To do so would be counterproductive and unsafe.  He gets dressed every morning, putting on his Sheepdog patch and his cross shield necklace, kisses me and the boys while we sleep, and drives away.  The fear stays at home.  The fear stays with me.

Like so many other things in our lives, I can be crippled by it or I can conquer it.  In this case, though, we're stuck in the middle. I know that the worry is never going to go away.  Not ever.  And that it will continue to sneak up on us, leaving us breathless and on our knees. Conquest is just not an option.  I refuse to be crippled by it, so I suppose we are left with coping.

Praying and pressing on.

So tonight, please join me in praying for Mike's brother in blue, who from initial reports is expected to survive.  Join me in thanking God for those who willingly stand between you and the darkness.  Pray for their safety.  Pray for their families.  And yes, pray especially for those who have gone so far off track that their only recourse is violence.

"The sheep pretend the wolf will never come, but the sheepdog lives for that day!"

Confessions

1) We spent our anniversary dinner watching basketball at Taco Mac and were asleep by 9:30.

My dear cousin Margaret made a multi-purpose cookie cake (not only was it Easter, CDH day, our anniversary, but also my cousin Mitchell's birthday), so we took cheesy cake re-enactment pictures...

 

"Take a picture before we leave for dinner!" I said to my brother-in-law.

Not what I had in mind.  But this is confessions, and this is our marriage in a nutshell. ;-)

Much better.  All I see in this picture is my glaring ugly kneecaps.

2)  Before Sunday, my kneecaps have not been in open air in probably 4 years.  

If you have seen my kneecaps in person, take that as a testament to our friendship.  There are many reasons for this, not the least of which are my ghastly pale skin, general post babies fatness, and my pregnancy leftover varicose veins that are so bad that they will soon be requiring surgery. I wear nothing shorter than capri pants, even in the dead of summer, and the cover-up sarong stays on until the SECOND I get into a pool.

Sister and I were out shopping Saturday and both decided enough was enough.  The time for hiding behind maxi skirts was over.  Too many adorable dresses to pass up.  So, through mutual pep-talking, we each bought dresses that were WAY far out of our individual comfort zones.  And my kneecaps were afraid.

3)  My kneecaps almost didn't make it to church Sunday morning.

I got myself dressed Sunday morning, and finally felt some modicum of self-confidence due to:
a) having lost 40% of my post-babies pounds
b) Spanx
c) Kate Middleton-ing myself with super sheer hose and nude heels

HOSIERY FANS UNITE!  I love and adore her for reminding today's women that real ladies cover their legs and a multitude of uglies with nylon.  Wonder how she'll do if she has to wrestle the baby bump into prescription support hose. Been there, done that, honey.

I actually blow dried my hair.  I was SET!  And then, as we are walking out the door, a sweet little voice says in a somewhat panicked tone...

"MOM!  You CANNOT go to church without pants!"

*And there goes a little air out of my balloon.*

 "But sweetie, this is a dress and it's okay!"

"NO!  MOM!  Dresses are supposed to be long. I can see your legs!  YOU NEED PANTS!"

*pffffffffffffffffffffffffttttttttttttttttttttttttttt goes Abby's balloon*

At this point, I very strongly considered skipping church and going to the Krispy Kreme drive thru to drown my sorrows.  However, I managed to convince him to rub my legs, and that the fabric he felt counted as pants.   He was skeptical at best.

But I went.  And I am glad I did.  The first step to kneecap acceptance is the hardest.

4) Our house violated my "Easter is not Christmas" rule.  The Easter Bunny brought Jeremiah a bike.

And the Easter Bunny felt shame.  He usually decides that if it didn't come from the dollar spot at Target and/or it doesn't fit in your basket, it's too much.

TO BE FAIR... Santa Claus had originally brought Jeremiah a bike, but Santa screwed up and brought one that was correctly sized for his height, but just too darn big for him to control.  He has been terrified to ride it since day one, and Santa has felt sad.  The Easter Bunny caught wind of this, and decided to rectify the situation and to put Santa's bike away for a year or two.

And life has been grand. It has lights and sirens and is WAY COOLER than the big boy bike. For now.

**Excuse the total parenting fail in forgetting the bike helmet when going to the park.**

He rode that sucker all the way around a 2.2 mile trail with NO PROBLEMS AT ALL!  He was so proud of himself. 

Look at him. 

Brazenly standing there with his kneecaps all kinds of showing, 

hand on his hip and feeling feisty.  

There are lessons to be learned here, I think.

 I could eat those knobby lil' knees up.

5)  It's official. And I am scared to death!

I actually registered early for the marathon today (with a discount!), thanks to DVC member perks.  Our reservations are made... Wilderness Lodge for now, will try to switch it over to an Epcot resort when the seven month window opens.  This is good news.  Now I have a goal.  A concrete, PAID FOR goal.

But it still makes me completely sweaty-armpits terrified.

Training is going well-- I count January as my official start to training, and I have noticed a HUGE improvement in my stamina just 3 months.  Not to mention, despite making zero improvement to my eating habits, 13 lbs have come off since January 19th.

Totally not my motivation for doing this race, but definitely a nice side effect!

278 days to get ready.
Comin' for you, Mouse!

Easter Festivities!!!!

 I love and adore Easter.  I always have.  It has always been such a celebratory time-- as a child, you celebrate that the weather finally starts to warm up, you get fancy new clothes, and obscene amounts of candy appear in your house overnight.
As you get older, you finally start to grasp the magnitude of that day thousands of years ago when the stone rolled away and Jesus emerged victorious.  You start to realize that you are a stubborn wretch who screws up every day, but that because of Jesus and His sacrifice you have a hope and a future. Then you become a parent, get a whole new idea of what the word "love" means, and fully understand what it meant for God to love the world SO MUCH that he gave his son.

And you still celebrate the candy and the clothes. Let's be real.

We had so many fun things to do this week--
it started with a trip to Bass Pro Shops.  Despite my Christmas rage at them, I really just can't say how nice it is that they put on free festivities for all.  They had a fun little Easter egg hunt throughout the store (eggs were hidden in all the departments, tucked into hats and mittens, underneath taxidermied turkeys, etc. etc. etc.), crafts, and free photos with the Easter bunny.

 

 Redneck fun, friends. 

 The kiddos made these cute little bunnies.

 My two proper Southern gentlemen, seersucker suits, bucks, and bowties, waiting to see the bunny.

I had JUST. BRUSHED. PARKER'S. HAIR.  

Tickles me pink.

We also had Jeremiah's egg hunt at preschool, which was big fun despite being 30 degrees.  At the end of March.  This Georgia gal no likey the cold.

 

Egg hunt superstar!!

We woke up Sunday morning to a few goodies from the Easter Bunny...

  

Sweetest bunnies ever.

*Jeremiah's basket had a very important note from the Easter Bunny... more on that in a bit*

We went to church (Mike had to work but took a half day and was home for lunch)

This dress is a WHOLE. OTHER. BLOG. POST.

Jiminy crickets.

We then met up at Sister's house for food and egg hunt with the family, despite 2 minute torrential downours of rain every 15 minutes.

 Love these kiddos.

JeanJean and her great grandkids.

Get ready, Disney World, this crew is headed your way in 4 short weeks!!

Such a fun day.  So many blessings.  I hope yours was, too!