Abandon Hope, All Ye Who Enter Here

At least once a week, someone posts some article on Facebook about how we self-edit our electronic lives who only include the highlights.  At least once a month, I have someone tell me how picture perfect life must be here at the Knolls. I try not to laugh in those people's faces.

In the interest of reality, this post is coming to you live from the 9th circle of Hades. Pull up a chunk of ice and observe, if you dare!

Let's recap-

Sunday-
*Parker enters Day 4 of "intestinal upset" due to teething.  Suffice it to say, my laundry room has been going non-stop with loads of crib sheets and pajamas. I remain convinced that changing crib sheets is one activity that will be assigned to those who spend eternity in this 9th circle.
*Family Fun Day at the Park quickly morphs into the start of The Knolls' Descent Into The Underworld.  My sweet Jeremiah, who is normally the sweetest child on the face of this earth, loses a screw as 4 year olds sometimes do.  Pitched an unholy fit and said he did not want to ride bikes and wanted to leave.
WISH GRANTED.
After a stern talking to in the car, we run into BJ's to use our free trial coupon to pick up some essentials.  Jeremiah's temporary good mood evaporates.
*Jeremiah dragged kicking and screaming out of  BJ's.  Possessed child shouts echoing off the rafters.  DFACS probably called.
*Jeremiah put to bed early.  Parker explodes through 3rd outfit of day.
*Parker goes through 3 sets of PJs and 2 crib sheets overnight.
*My sweet puppy Maggie contracts a bladder infection.  We wake to many exciting surprises Monday morning.
*Abby's phone erases all data.

Monday-
*A very sleepy JB goes to school.  A very sleepy Parker and Mommy go to the doctor just to be sure nothing is wrong.  It's not.  We are advised to cut out all dairy, including formula, for a day or two and eat only starchy foods and drink only clear liquids.
*Parker is exposed to Jello for the first time.

*A brief ray of sunshine during the day-- all is well, Parker's belly is under control, we ate dinner with my family, we have turned the corner!!
*2 am- Parker wakes up hungry, as Pedialyte doesn't keep one's belly full for long.  Feed him, change his diaper, try to put him to bed.  He will have none of it.  Goes back to sleep at 5 am.
*3 am- Jeremiah informs us that he ate too many cookies at Naner's house and starts puking.

Tuesday-
*A quiet morning.  Everyone is tired.  Mike has taken the day off, for which I bless his soul.  Jeremiah feels better but remains peaked. I have a headache that could force my skull to split open.
*Our steam cleaner (a necessity with recent events) blew up.  Sister's borrowed one works like a champ. I have run out of carpet shampoo.
*Laundry is creeping out of our closets, down the stairs, and taking over my house. I have run out of detergent.
*THERE ARE NO COOKIES IN THIS HOUSE.

Mike has been sent to the store to fix as much of this as possible.
I am at home, watching over my sleeping babes and my sick puppy.

We have somehow angered the gods, we Knolls.  I will shortly be climbing the tallest pyramid with a goat if that's what it takes.

All of this to say, this is how we are rolling right now. We are covered in poop and puke and pee.  It ain't pretty, but it's us.  It's all temporary and we will soon get the heck out of this dark, dark place and back into the light.  Very much hoping for sooner than later.

Le sigh. 

100th Post! Cursing and Anti-Feminism and Pink Balls!

Yahoo!  100 posts on this little blog of mine.  And by some freakish miracle, 200,000 pageviews.  A special thank you to anybody who cares enough about our little family to check in here.  We heart you.

Here are some random musings from this weekend:

1) Just lost EVERYTHING on my phone.  Was sitting on my sofa, got a text from Hubs, and all of a sudden my contact list disappeared.  Shortly thereafter, everything else went. *here is where I hear the wicked cackling of my Sister, who would tell me that if I ever bothered to back anything from my phone up this wouldn't happen. Whatevs.*
So, peeps, send me a text with your number and your name.  'Cause I don't know you anymore.  And if you sent me a text recently and I didn't answer you, that's why.  Send it again.
Ugly ugly ugly thoughts.  Stomping and stomping and stomping.

2)  Today was Daytona Day, and it pleases my heart to have my official "bridge the gap between football seasons" sport up and going again.  It has been a long few weeks since the Superbowl.  I am pleased to report that I took my first NASCAR nap of the season today, and it was glorious. As NASCAR naps always are.

3)  Speaking of NASCAR, I am somewhat disappointed in my lack of Girl Power Female Solidarity.  I was downright belligerently angry to see Erin Andrews doing "commentary" before the race (mostly it consisted of running around the pits shrieking and flapping her hands), and NO RACE SHOULD INVOLVE DARRELL WALTRIP TALKING ABOUT WHAT HAPPENS WHEN DRIVERS DATE EACH OTHER.
Super for you, Danica, you led a lap.  Stop sashaying around on TV in bikinis and maybe I'll take you seriously.

4) What I lack in "females in NASCAR" support, I make up for in "females participating in foolish obstacle races" support.  I had the pleasure of running the Diva Dash yesterday-- Sister's group had some last minute cancellations and needed some warm bodies.  I am such, and it sounded like a fun way to spend a Saturday, running a 5k with girly obstacles scattered throughout.
IT WAS A BLAST!  It was also freezing cold and beyond muddy due to near constant rain for the last few days.  Still, it was a delightful morning spent: (photos from Crazy Girl Kristen and the Diva Dash page. 'Cause I had some, and NOW THEY ARE GONE.  Stupid phone.)

-Running up and down a soggy mountain trail
-Scaling walls
-Bounding over tire heaps and construction barrels
-Scaling cargo nets and hay bales

-Stepping over stair straps and through mazes
-Carrying logs through the forest

-Zooming through monkey bars and bungee cord webs
-Dodging big pink balls

-Getting taken out by Sister's helpless body as she ate it on the muddy creek bank, knocking my feet out from under me and sending me neck-deep in freezing water. But I love her anyway.

-Watching the tractor pull in the pastures, where we had parked, that resulted from many soccer-mom SUVs getting stuck in the ankle deep mud.  They literally called in surrounding farmer boys with their tractors and Bobcats.

Look at that sweet man in this photo a racer posted.  Above and beyond the call of duty, sir.  Damsels in distress thank you!

Adventures of the best kind, friends.

Still, I was able to run much more easily than I anticipated.  This was not a timed event, and the object was to have fun, but for the parts that I did run, I ran well and could have run much more.  (Yay marathon training!)  It was a fun morning with fun gals.

Speaking of marathon training- I am almost done with the Couch to 5k Program, which I have been using as my get-back-into-shape-since-you-haven't-run-since-October-2011 method.  It went pretty easily, and I feel good.  I've been averaging about 10 miles a week for the last month or so, and I'm ready to graduate to a full on marathon training program now that I feel like I have my feet under me.

I finished the Diva Dash Saturday and thought, "Super!  Now I just have to do that  8 and a half more times! Easy peasy!"
Riiiiiiiiiiiiiiight.

Simple Pleasures

I AM SO EXCITED by how many people have signed the White House petition, and how many people have shared it on Facebook.  It's gotten several hundred more signatures just since last night, and that's awesome.  I don't think we'll make it to 100,000 in time, but I am grateful for each of the thousands of sets of initials on there today.

In other news, we had the P-nut's 9 months well check today.  It was uneventful (not even any shots!) and she seemed pretty unconcerned with the crawling-by-St-Patty's deadline the development clinic gave us.  Jeremiah didn't crawl until he was almost 11 months, and he walked pretty soon after, so she thinks Parker will probably follow suit.

Because I am psychotic, I asked her if we needed to see the cardiologist or pulmonologist.  She said, and I quote, "I promise I will tell you if he starts to scare me."

Translation:  back off, Mama Bear.  Message received.

She did, however, state that we can use Easter as our new deadline for stepping ever so gently into the land of sunshine and relaxing about RSV.  Obviously, we are to be continuing to be careful, but that gives us a WHOLE MONTH of happy frolicking in the springtime pleasantness that we were not expecting.  Big news!

The biggest news of the week has been Mr. Big Pants himself-- he *finally* popped his first tooth (they have been lurking just under his gums for months and are just now starting to break through).   He has been remarkably well-tempered about it, and minus a few late night whimpers and Motrin doses, that tooth hasn't given him much grief. 

Is there some wood nearby that I can knock on?? 

He has also decided that it is time to start riding in the grocery buggy and high chair like a big boy.  This gives Abby-the-RSV-fearing-Mommy some hives, but it does mean no dealing with the stupid baby bucket, which I have been carting around in the back of my car ever since we moved him to his big boy car seat.

Oh, you grocery buggy cover.  I used it I think maybe thrice with Jeremiah before deciding that it was for the birds and exposing my sweet baby to all that lurks on the communal plastic of America.  I have ever so resentfully pulled it back out to use with Parker.  Wrestling with that thing results in not-nice phrases running through my mind, though I am grateful for the pea pod bolster pillow that props him up when he starts to slump over.   Patiently waiting for the day that I convince myself a swipe with the antibac wipes will suffice and I can leave that thing in the dust.

Crummy RSV season.

What I can say about The Great Isolation of 2013 is that it has caused a new appreciation amongst us Knolls for simple things.  We have always been a family on the go-- places to be, people to see.  Since we have been forced to modify our daily routines for Parker's sake, we have re-learned what it means to go out to dinner at an actual restaurant together.  Just tonight, we went to the Olive Garden to use a gift card.  I know, you're thinking, "WHOOOOOOOOOOOAAAAAAA, hang on there crazy folks!  The Olive Garden?? Living on the edge!" But hear me out.

We've been out to eat since Parker's been home, don't get me wrong.  However, it's often a quick meal where Parker is confined to his baby bucket and we get the heck out of dodge pretty quick.  95% of our meals are at home. Tonight, we all four sat at the table, Parker in his high chair with wretched floppy cover and suction cup placemat, and ate a leisurely meal.  Parker has determined that baby food is lame now that he has 14% of one tooth showing, and he shoveled breadsticks and pasta like it was going out of style.  We ate our dinners, had dessert and coffee, and left there, doggie bags in hand, feeling quite pleased with ourselves.

This time last year, family dinner at the Olive Garden wouldn't have rated too high on the Excitement-O-Meter.  Now, though, I have such a new appreciation for the simple pleasures a normal life brings. Of all the lessons I have learned this year, I hope this one sticks.  As our lives get less and less restrictive and more and more normal, I hope I can remember to savor seemingly little things as much as I savored this evening's quasi-authentic Italian food.

Boo to you, RSV season, but I begrudgingly offer thanks for putting things into perspective. 

Little Loves

You know what's lame?  When you type up an entire blog post Thursday and then forget to hit post.  Here we are, 4 days later.  Whatevs.  So let's do the time warp and pretend it's Thursday night. :-)

Happy Valentine's Day from the Knolls!

 

Cutest Valentines I could ask for!!!

We had a wonderful day.  Full of candy and kisses and hugs and big huge thank yous to our God.

 

Valentine's Gifts for Jeremiah's teachers. "Hugs and Kisses from Your Misters and Misses."

If overzealous room mom becomes a viable career path, THAT'S the day my ship will come in! 

 Is this not the most adorable thing you've ever seen?  Jeremiah got it from a friend at preschool.  I think his mom will be my first employee when Room Moms, Inc. takes off.  SO CUTE.

And who's that foxy guy, making my dinner for a change?  He stepped it up big time with some roasted chicken and mushrooms in a red wine reduction.  Love him so.

We visited Parker's surgeon, Dr. Parker, this morning, partly because he has us on a schedule of visiting every 6 months while getting chest x rays for him to review every 3 months.  Our visit today was focused on several things:

1) Any signs of reherniation
2)  Progress of possible CCAM on right lung
3)  Thoughts on having ultrasound of ECMO site to look for clotting (the veins on the right side of Parker's face are quite pronounced blue lines running up and down his cheeks.  This is somewhat to be expected, as he has no functioning jugular and the other blood vessels have to compensate.  Any other CDH mamas notice this on their ECMO babies?)
4) Recommendations for follow ups with cardiology and pulmonology

And here are our results:

1) "His chest looks perfect."  No signs of reherniation.  Delightful full lungs.  A perfectly smooth and intact diaphragm.  There was a possible-maybe-probably-not hiatal hernia (stomach moving up into the esophagus space) but he doesn't feel it's anything to worry about until Parker starts exhibiting signs of reflux (of which he has NONE, even after we recently discontinued his Prevacid.  He is now completely medicine free!)
2)  *hold onto your hat* The mysterious mass on his lung that has been there since birth is NOT VISIBLE on his x ray.  It just up and disappeared. Can't tell you what a relief that is to us.  Still, he scheduled us for a CAT scan in June to check blood flow in the lungs.  That will tell us definitively if there is anything there that will need to be surgically removed.  But he doesn't think so at this time.
3) He noted that the blue lines on Parker's face are more pronounced, but nothing out of the ordinary.  He gave us some signs to look for of what a dangerous clotting situation would look like, but again, he doesn't see any cause to worry about that now
4)  Abby: "So we need to schedule a follow up with the cardiologist?"
Dr. P:  "Why?  He has a structurally normal heart."
Abby:  " Pulmonologist?"
Dr. P:  "He doesn't have any signs of lung disease."
Abby:  "But... but... So we don't need to see any specialists right now?"
Dr. P:  "Normal pediatric care is all you need."

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The bottom line is this:  until Parker exhibits signs that he needs to see a specialist, we aren't going to see any specialists. We have one more follow up with the GI in May, and we'll continue to see the developmental clinic and the surgeon for the first 5 years.

But that's it.  Going into this diagnosis, I knew that the babies who survive wind up somewhere on a spectrum from highly-medically-dependent to downright normal.
I never imagined, during those dark days, that we would be on the "normal" side.
No tubes.  No medication.  No oxygen.

Just normal.

It goes without saying that we had some donuts on the way home, and it goes without saying that we are grateful beyond words for the news we got today.  Best Valentine's Day present ever!

**EDITED TO ADD THIS PART AFTER DEVELOPMENTS OVER THE WEEKEND**
Sadly, as soon as you get comfortable in your normal status,  you get hit square in the face by the death of a CDH baby who had made it out of the woods.  Little Grace, who was just 2, died this weekend from complications of a reherniation.  It is unimaginable to think of those parents, who got through the worst of it and probably felt the same way I do now-- the worst is over, we'll just keep an eye on things but she'll be fine.  And then she's gone.  I can't wrap my head around it.

If you haven't yet, PLEASE sign the White House petition to light the White House for CDH on April 19th.  Yes, it requires an email address to sign in, but for the love of pete.  Something has to be done.  CDH kills 72 babies A DAY.  Lighting the White House means awareness.  Awareness means research.  Research means babies that come home and don't die when they are 2 years old.

Click HERE to sign!  

26.2

11 months from today, I'm going to run a marathon.

There... it's in writing, and that means it's officially official.  I'm doing this.

The first reaction I have gotten when I have told the selected few who know about this is usually, "WHY?? You must be crazy."

Maybe I am.  But I'm doing it.  January 12, 2014-- the good Lord willing and the creek don't rise, I am going to cross the finish line of the Walt Disney World Marathon.

It will not be fast.  It will not be pretty.  But I will do it.

Why?  Lots of reasons.

1)  IT'S DISNEY!  Y'all know... that in and of itself is reason enough for our family.  Still, I have run 3 half marathons at Disney (2 Princesses and a Wine and Dine) and done the Expedition Everest Challenge. RunDisney events are the perfect combination-- challenging races with smiles every mile.  I know that sounds beyond cheesy, but it's true.  They go above and beyond to make the entire course fun and interactive, with characters and volunteers supporting every step you take.  If I'm going to run 26.2 miles, it's going to be with Mickey Mouse waiting for me at the end. 

Plus, like I need another reason to schedule a Disney trip.  For serious.

2)  I need to get back in the habit of running.  Running has always been a good outlet-- it's easy to get lost in "one foot in front of the other" over and over again.  Running used to be all kinds of things for me-- relaxing when I needed to unwind, a stress-reliever when I was cross, and a source of pride when I overcame obstacles.  I miss it. 

Now that Parker is home and we have recovered (mostly) from the trauma of his first few months, I feel like I can finally take some "me time" and get back to where I once was.  I have a LONG WAY TO GO, and training will be hard.  But I have the greatest motivation in the world.

3) My boys.  I need to be healthy for my boys.  I'm fighting a steep hereditary slope of cardiac problems, obesity, osteoporosis, cancer history, on and on and on.  I am going to do everything in my power while I am relatively young to make those battles easier when I am older.  I WILL NOT allow myself to increase the risk of leaving my boys too soon.  All I need to do when I need a kick in the pants is to picture their little faces.

My Jeremiah, who has the sweetest soul and tenderest heart.
My Parker, whose battles in his first year of life make 26.2 miles look like taking a nap.

So there it is.  A written statement, sworn this 12th day of February 2013.

I'm going to need help.  I'm going to need encouragement. I'm going to need accountability.  I'm going to need some cute running clothes.

But I'm doing it.

I'm coming for you, Mouse.

Where Have You Been, Mama Knoll?

I just finished a post for my cake blog entitled "Where Have You Been, Cake Lady?"  'Cause, well, it hadn't been updated in a year.  We had some things going on.

And here I am, more than a month and a few gentle nudges later.  So sorry.  I have been baking baking baking, as well as chasing my two beasts around.  We had a nice long lull in doctor visits for the month of January, and I soaked every last minute of it up.  February is an absolute juggernaut, since Parker is 9 months old and ripe for many follow ups.

(PS, if you would like automatic updates as to when I update this blog, you can follow by email now!  I added a little gizmo over yonder ----------------------------> where you can enter your email address and it will alert you to new posts.  Yay technology!)

I know you're here mostly for pictures, so let's dispense with formalities and get straight to it.  The recap of Parker's first developmental check can be found after the cuteness.

After a superhero birthday party.

Dining al fresco during our few moments of sun for the whole month.

Cheering on the Falcons.  Failing miserably.

Trying to tame Parker's hair.  Failing miserably.

Venturing to Medieval Times with Sister and her fam.

A shining example of our family motto:

"We aren't normal people.  We're the Griswolds!"

Riding the park train at the Railway Museum with EE.

Rocking some coordinating ensembles.

Keeping Krispy Kreme in business.

**A confession:  many of you are probably thinking... Hmmm that's a lot of visits to germy places for a baby who is supposed to be in RSV Lockdown.  I could lie and tell you that we have a train in our yard and a donut machine in our basement, but suffice it to say this:  For the mental health of each of the Knolls, we go on field trips.  A greatly reduced number, but field trips nonetheless.  We are careful.  We own stock in Saniwipes. And we are counting the seconds until May 1st.**

In medical news, our February Medical Gauntlet started with a chest x-ray (which we have every 3 months) and Parker's first visit to the developmental clinic.

1) The Chest X-Ray

Wretched and terrible and baby torture, according to the Pnut.  He is lucky and does not yet have to partake in the Baby Tube for xrays, and for now I can just hold his arms above his head while he lays on his back. 

Yowza!!!

We won't get the results from his x-ray until we meet with the surgeon on Feb 14th.  He is looking for signs of reherniation, which is more likely due to the fact that Parker's repair was done by patch.  He will be looking at the ECMO site to see if there are any signs of clotting in the veins that are compensating for Parker's lack of a functioning jugular on the right side. He is also looking at the mystery lung mass which has been present on Parker's right lung since birth.  The concern is that is is a CCAM (go here for medical jargon) that will require surgical removal quite soon.  It goes without saying that we are hoping and praying that this is NOT the case, and that whatever it is won't cause any trouble.  At the same time, we want it figured out and dealt with before it can start to undo all the progress Parker has made in the breathing department.

2)  The Developmental Clinic

We ventured back to the hospital yesterday for our first visit with the Developmental Clinic.  They follow NICU babies for the first 5 years of life, twice a year for the first two and then once a year until Kindergarten.  They do a full battery of assessments, physical, cognitive, psychological, etc.  At 9 months, the focus is primarily on fine and gross motor skills.

The neonatologist performed some physical exams (he continues to be a GIANT weighing in at 22 pounds and 29 inches long), followed by some time with a physical therapist.  Parker was tired and hungry during this appointment, which resulted in several loudly vocalized protests to their requests that he display his baby skills.  Still, they were able to get a pretty good idea of where he is, and graded him in the 25th percentile on a normal development curve.

25th percentile might sound low, but the fact that he's even on the curve is blessed news to us. Given that he spent the first month of his life paralyzed, there is no surprise that he is lacking in some core strength.  He spent the first week and a half lying on the left side of his head, so his natural tendency still is to look to his left.  His muscles on the right side of his neck and shoulders are tight, but he has full range of motion.  He has no problem with reaching, grasping, sitting, rolling, etc. but shows very little inclination to crawl.

At this time, they don't feel like he needs any extra therapy of any kind.  They gave us some exercises to build his core strength and stretch his back, and they would like to see him crawling in 6 weeks.

Y'all know us well enough to know that we THRIVE on deadlines and on checklists.  We love homework.  And so it begins, much to the Pnut's chagrin, that he has many many many hours of baby workouts coming his way.  The delightful thing is that I have a most willing and effective 4 year old therapy assistant who will crawl all over the house, build pillow chutes, and play endless rounds of "pop up behind the sofa peek-a-boo" with his brother.

All in all, it was a visit full of good news for us-- Parker is NOT BEHIND for his age.  He's toward the low end, and they'd like to see some progress, but he's NORMAL.  We don't often hear that word used when describing Parker, and as much as we try to treat him like a regular baby, he's not.  The doctors said repeatedly that the areas in which he is low are easily fixable, and that they, by nature of their jobs, are picky and finding even small faults that normal people would never notice.  They gave us some huge pats on the back for our part in helping him overcome the pretty big hole he had to dig himself out of at the beginning.

We are the Knolls, and we are nerds, so leaving their office with homework to finish and a gold star for parenting was about the best we could ask for.

Up next-- Synagis #4 tomorrow, surgeon next week, pediatrician the week after, and possible consults with pulmonology and cardiology in the not so distant future.