Lil' Punkins

We had Parker's follow up swallow study last Thursday, which resulted in a big old "Keep doing what you're doing (i.e thickening with rice cereal) and come back in three months."  No real improvement on the thin liquids, but the slightly thickened liquids were fine.  She did use different bottles than what Parker is used to, so I'm not sure if that made any difference at all.  Not too worried about it, at the end of the day.  She said to keep rocking along with solid foods and that she feels we will be released from anything to do with speech/feeding in 3 months (we also have another follow up with GI at that point, so hopefully we can kiss all that goodbye!)

After the swallow study, we took off for Burt's Pumpkin Farm in Dawsonville, Georgia.  All the cool kids go to Burt's, so we started taking Jeremiah when he was a wee one.  It is a grand and glorious time, wandering about to choose JUST the right pumpkin for each of us.  There's a hayride (longest hayride ever) and it's close to Amicalola Falls state park, where we usually go after the pumpkin patch.  We didn't go this year, as we had gotten a late start to our day.  Still, we had a BALL and Mike and I had many an emotional moment watching Parker's face light up at the fall festivities.  We have embraced the basketcase status for this year, as each and every Knoll Family Tradition arrives and we weep copious happy tears that the P-nut gets to participate.

The boys had a big old time.  Trying to photograph them together was darn near impossible.  Parker was dolled up in the Pumpkin Silly Suit that was Jeremiah's, and he spent the entire day smiling until we tried to take his picture. Stinker.  Jeremiah, on the other hand, was happy to show off his "pretty smile" we have been working on as opposed to the "teeth clenched chin out monster smile" he usually gets when it is picture time.


Love these family memories!

This was as good as it was going to get with these two monkeys.

 I like 'em tall and skinny.  Mike likes 'em short and fat.

 Jeremiah likes 'em small and round.  Parker apparently likes curly stems.

 We take these same pictures every year.  

Along with one on the hayride... love the progression!

 2009-- Silly Jeremiah!

 

2010- year of the Festive T Shirts

 

2011-  Mike liked his t-shirt apparently.  No idea why we aren't on the hayride!

 2012-- All together at last.  P-nut chooses not to participate, thankyouverymuch.

 

 Love my boys.  (1.5 seconds before Parker threw his "I am done with the pumpkins" fit.)

Family Freedom

... is pretty much over.  Sad face.

Still, we have managed to cram in a gigantic amount of SuperFamilyFun in the last few weeks:

We have been to Home Depot to build firetrucks with Homer.

We have been to the Train Museum with EE (a traditional weekend activity Sister and I shared with Dad more times than I can count).

 

 I love Crescent engines.  They are just so beautiful.

 

 Here is an exquisite example of "The Two Edwards"-- Parker and my dad look 

EXACTLY ALIKE. 

We went to the Georgia National Fair, which I, despite being a born and bred Georgia girl somehow have never attended.  Mike went to high school just outside of Perry, so he was happy to head back and to show Jeremiah his first Big Fair. 

I was just excited to go because the whole entire concept of any fair is a sheer delight-- knowing that you are hurtling through the air on a ride held together with two cotter pins, the ability to eat various and sundry fried objects, the irresistible lure of Serpentina, the SnakeGirl.

 

BEHOLD-- Fried KoolAid!! I kid you not.  It was DELICIOUS.

 

I made him spend the dollar to go in 'cause I chickened out.  He was not pleased.

The fair did not disappoint the grown up Knolls, or the smallest one. 

 My P-nut at the P-nut stand!  He had a ball taking in all the sights, sounds, and smells.

Jeremiah, on the other hand....

He had a teensy moment of fun at the fun house.

 

He was a lil' bit happy to win this gun at the fishing game, until it broke 2.5 minutes later.

He had an okay time on the Wild Mouse ride.

 He had an OUTRIGHT PANIC ATTACK on the baby train.

They had to stop the ride.

Seriously, dude?

He did love the circus.  And his blue lightup sword he got as a souvenir.  He's just so darn timid about anything new and unknown.  It makes me bonkers, to tell the truth.  He is SO MUCH like his Daddy-- Mike is quite a creature of habit and doesn't respond well to new circumstances, even if I shout from the rooftops that said circumstances will bring sunshine and delight.  Jeremiah is much the same-- he's not a thrill seeker. He's very happy with his life the way it is and sees no reason at all to go throwing in potentially upsetting scenarios.  My favorite example is when my dad kept him overnight for the first time-- Jeremiah flatly refused to partake in the Grandchildren Rite of Passage of choosing one of Dad's t-shirts to mark as his own and to sleep in each time he visits.  His response?  A very polite, "No thanks, EE, I have my own pajamas."

I don't know if he will outgrow it, or if the timidity is here to stay.  We do our best to find a balance between allowing him to decide what he'd like to try and sort of shoving him into new situations before he has a chance to protest.  Watching him find his little personality and form his opinions on life is endlessly fascinating.  It's hard work to be a three year old.

Our final family outing of the season was to the pumpkin patch yesterday.  I am never happier than when I am on some adventure with my three favorite boys... These last few weeks have felt like shoving acorns in my cheeks to get me through the long and dreary winter.  Drinking it all in because I know these moments are fleeting.  Now I'm sad... where's the fried KoolAid???

Five Months Old and Five Months of Timeout

Who's five months old?

This guy.  

Who's eating everything in sight?

This guy.

Parker has jumped on board the solid food train with both feet.  I usually give him a mid-morning fruit serving and a mid-afternoon veggie serving, and he has quickly set his internal clock to know when it is food time. The arms start waving.  The feet start kicking.  The grunting starts.

Thus far, we haven't found anything he doesn't like.  Successes include apples, pears, bananas, pumpkin, peas, green beans, carrots, sweet potatoes (the fave), and squash.  And cake.

Me?  Cake?

Well, maybe just a bite.

Speaking of cakes, it has been busy around here. I make cakes for family and friends, and I've just now gotten back in the groove of things.  This weekend was a wedding cake and a Death Star replica cake.  It's fun for me and I am happy to be back at it!

 I love good photographers.  They can make things look SO DREAMY! 
(thank you Jenny Wright!)

In other news, Parker was *finally* approved for his Synagis shots. This is a relief on many counts, as it is a vaccine that he desperately needs and we, quite frankly, weren't very excited about shelling out $7,000 for.  It took some doing, but my pediatrician has proven to me once again why I love her so much.  She took over the appeal, and within a few days we were golden.  Smooches to Dr. Putnam.

While I am thrilled to have the Synagis shots coming soon, I am also somewhat saddened to see them looming on the horizon.  Synagis season=RSV season=hibernation for the Knolls.  We are under strict orders to keep Parker "in a bubble" from now through April.

I am not a germ-o-phobe mom.  I never have been... but when someone tells you "What amounts to a cold for other kids is potentially fatal to your baby," your perspective changes.  We are advised to keep him at home as much as possible.  When Jeremiah comes home from school, he has to take off his shoes, change his clothes, and scrub his hands and face. Mike will have to keep his boots off the carpet, shower, and change before he can hold Parker.  Visits from family will be exceptionally limited.  Visits to family will be exceptionally limited and only undertaken on the understanding that anyone present with "allergies" will equal the hasty removal of the Knolls.  No more wandering aimlessly at the mall.  I can go to Target or to the grocery store if I have to, but not just for fun.  We can venture to church if we sit in the isolation chamber.

The concept frightens me. I CANNOT stay home for 24 hours together.  I start to get stir-crazy, and I have passed that trait on to Jeremiah.  He invariably asks, on non-school days, by lunchtime, "Where are we going today, Mom?"  Well, dearest, a whole lot of nowhere for FIVE. LONG. MONTHS.

HOWEVER, where are we going the first weekend in May?

 The Happiest Place on Earth!!!

Yep.  Parker finally gets to cash in the trip we promised as he lay on life support for 10 days. I will finally get to have my family of four on Main Street (can you say BIG HUGE SOBBING MESS). It will be my grandmother's 80th birthday and Parker's first, so what better way to celebrate the end of our winter incarceration?  I certainly can't think of one.

Mike and I have also scheduled a little getaway trip there for the first weekend in December. We basically forgot what it was like to be married to each other for a while there, and we are excited to spend some time being Mike and Abby instead of Mommy and Daddy.  I think it is SO SO SO important for couples to remember to do that! *big props to Naner and Big Tom for volunteering to wrangle the boys for four days.  There's never been a bigger germ-o-phobe than my sister, so they will be in good hands*

We've been spending our last remaining days of freedom cramming in as much family fun as possible.  That will have to be an update for later this week.  We have Parker's follow up swallow study on Thursday, and I am so hopeful that they will see improvement and that solids aren't presenting  a problem.  Prayers appreciated as always!

**speaking of prayers, my sweet Daddy had kind-of-emergency-yet-happily-sucessful eye surgery on Friday.  His recovery is going well, but it's mentally trying and physically uncomfortable.  Praying for his comfort and for a good report from the eye doctor on Wednesday!**

Four Years

Today marks four years since my sweet mama passed away.  I was seven months pregnant with Jeremiah, it came out of nowhere, and I was less than pleased with God for His choice to take her when I needed her most. (you can click HERE and HERE to revisit these times on my old blog)

Today is also Pregnancy and Infant Loss Day, which I have a whole new appreciation for.  We got so very close to being there, and so very many (too many) of my real and "imaginary Internet" friends have suffered loss. I bet they also found themselves less than pleased with God about His choices.

I don't think there is any Christian who can honestly say, "I have never doubted God's plan for my life."  Well, actually, that's not true.  I never doubted God's plan for the first 27 years of my life, mostly because I was never brought to any unexpected, smack-you-in-the-face drama that shook my foundation of security.  Sure, there were light and momentary times along the way that were not exactly fun, but until Mom died, I was never de-railed.

The fact that Mom did die was my first real experience with "unanswered" prayers.  Mom had shattered her hip earlier that year and undergone orthopedic surgeries to fix it.  While she was waiting to heal, she was not allowed to walk at all.  For months and months and months.  Each follow-up with the doctors brought less than encouraging news... the road to recovery was going to be long and slow.  And she would be wheelchair bound for the foreseeable future.

That didn't sit too well with my pregnant self-- I needed my mama to be better by the time Jeremiah got here.  So that's what I prayed for.  Over and over and over and over again.

October 15, 2008, a blood clot killed her in her sleep.   Not what I had in mind.

Working through Mom's death sucked, to be blunt.  I spent most of every day asking God if He was REALLY SURE this was the best way to go about things.  Perhaps He hadn't heard me correctly.  When i said, "I need Mom to be healed by December," I did NOT mean healed in Heaven.  Maybe I hadn't been clear.  Maybe God heard me just fine, thankyouverymuch, but knew that His way was the better way.

Better how?  I don't know.  I have found that trying, in the moment, to figure out what God's doing is pretty much an exercise in futility.  "Maybe she just wasn't going to get better.  Now you know she's not in pain anymore."  Yeah, sure, but let's talk about this pain in my chest that makes it hard for ME to breathe right now.  "One day all this will make sense.  Unexpected blessings will flow from this moment in time."  Super.  I will be sure to let you know when those nebulous blessings have made up for the fact that I don't have a mom anymore.  "THIS IS ALL A PART OF GOD'S PLAN."  Yeah, well, I think God's plan is stupid.

I don't honestly know how I made it through the next few weeks until Jeremiah was born, but looking back on it I can say with certainty that there was a hedge prayed around me that was so deep and so strong and so full of people standing in my gaps that I didn't have a choice but to carry on.  It honestly felt like floating, which I know is partially due to a physiological response to trauma, but there was more to it than that.

There came a point, right after Jeremiah was born and the Christmas rush was over, that I had to make a choice.  Hormones were NOT on my side, and I was teetering on a very thin edge.  Option 1:  Lock myself in my room, shout and yell and wave my fists at God, assume that He had abandoned me in my greatest hour of need, and emerge from my room a woman who was going to rely on herself and things that are seen to carry on.  Option 2:  Lock myself in my room, shout and yell and wave my fists at God, acknowledge that perhaps my feelings of abandonment had something to do with the fact that I had attempted to exercise veto power over God's plans, and emerge from my room a woman who was choosing to rely on faith and the unseen  to carry on.

I knew beyond a shadow of a doubt that my mama would be so disappointed in me for allowing her to become the reason I turned away from God.  She didn't deserve that-- she was a woman of exceptionally strong faith and she did everything in her power to pass that on to my sister and me.  At the very least, I owed it to her to try.   

Jeremiah 29:13 says, "You will seek me and find me when you seek me with all your heart."  So I did. It wasn't pretty.  It didn't happen overnight. I can't honestly say that I don't still struggle with it, because I do.  What I can say is that the "blessings in disguise" platitude might just have some merit to it.

Mom's death was the first time my faith was shaken to the very core.  It was the proverbial breaking point. Little did I know that 3 years later I would run smack into another one.  

Trust me, after we got Parker's diagnosis  I spent lots of time having the same conversations with God-- "Yes, hello, I have this kind of big problem, but I know how to fix it!  Trust me, my way is going to be GREAT!  Remember when you decided to take my mom to heaven out of nowhere?  I'm gonna need you to not do that this time.  Kthxbye."  And it's fair to say that I carried some lingering doubts about the effectiveness of praying to a God who kind of ignored me the first time.

Back to decision time.  Go my way or God's way?  I was standing at the entrance to a dark and scary forest that was who knows how deep and full of who knows what monsters.  Do I go it on my own steam and spend every day fighting tooth and nail only to discover that I have been going in circles, or do I go in trusting that God will *eventually* lead me to the other side, though it might be a dark and scary journey?  Strangely enough, it was easier this time. Why?  I guess because I had seen that God could, and would, carry me through whatever was coming, good or bad, so long as I stopped trying to wriggle out of His hands and run the opposite direction.

My heart is sad today 'cause I miss my Mom.  Do I still wish she was here with us?  Obviously.  Do I pretend like saying "God's plan is perfect" makes all the rainclouds go away?  No.  But what I have seen, without fail, is that God meets us at our breaking points and says, "'For I know the plans I have for you, ...plans to prosper you and not to harm you, plans to give you hope and a future."  (Jer 29:11) It's just up to us to believe it.

A Month Off For Good Behavior

Yesterday, we had another weight check for Parker.  Needless to say, our pediatrician was FURIOUS about the Synagis denial and had already come up with an appeal plan.  I am going to let her handle it, as my dealings with the insurance company would probably consist of much fist waving and not much logic. 

Interestingly, of the three patients our office has submitted (of which Parker is one), only one has been approved... the kid that she finds least likely to be affected by RSV. The third child is having OPEN HEART SURGERY THIS MONTH and was still denied.  For the love of pete.  If we get denied again, we are just going to have to pay out of pocket.  Hooray $6000! I do know there are lots of assistance programs available, but we don't qualify for the ones I have researched so far.

Bake sale? Car wash? Hopefully it won't come to that. :-)

In other news, Parker gained one pound ten ounces since his last weigh check 2 weeks ago.  He now tips the scale at 17 pounds 12 oz.  Needless to say, weight gain doesn't seem to be of much concern anymore!  As a result, we have been granted time off and, for the first time ever, get to go A WHOLE MONTH with no appointments!  Well, no pediatrician appointments.  We still have a follow up with GI doctor on Monday and the follow up swallow study in a few weeks.  Still, we are pleased!!!

Side note- one of my favorite things about being a mommy is having an excuse to relive my childhood, which was an exceptionally happy one.  Right now, Jeremiah is enraptured with my old Ramona Quimby books, which we read chapters of before every naptime and bedtime.  He saw them on the shelf one day and asked about them, and has requested that we go get some more from the library when we go through those.  I think I might look for the "boy" versions about Henry Huggins.  Or perhaps the Fudge books.  It tickles my English teacher heart that he wants to read chapter books.  Poor child... Teacher Mommy makes him tell me what happened yesterday before we read the next chapter.  Reading comprehension for three year olds!  Most fun mom ever!!  Still, I need "boy book" recommendations.  AND NO CAPTAIN UNDERPANTS! :-)

Oh, and remember that silly Pinterest baby?  She's got nothing on my little Pnut. Or my sweet aunt Nesie who caught my Contagious Crazies.

His big floppy ears make my heart sing. Mostly 'cause I have the same ones.

Denied

Every time I hear that word, my mind goes to Wayne's World.

"Car."
"Game on!"
"Ohhhhh, Gretzky is denied!"

Welcome to random bullet time.  Strap in.

**We are now on round two of being denied Synagis, which is a $1500-a-pop (times four or five doses) vaccine for RSV.  (RSV season starts quite soon, and if Parker were to contract it, we would be right back at Egleston in a VERY BAD PLACE.)  I will not get into particulars except to say that the powers that be at Cigna had the audacity to say that there is "insufficient evidence that Parker's lungs are compromised."  Get ready, Cigna, 'cause there's a storm a-comin'.

**My aunt Nesie came and took Parker's first round of pictures Thursday.  They are just absolutely beautiful and I get all sorts of weepy looking at them.  They were supposed to be "3 month" pictures, but well, you know, we had that whole NICU thing going on.  Click HERE to see the preview, and if you'd like to see all of them, the password is "peanut".  She does such an amazing job.  It has even come to pass that I no longer dread Christmas card photo sessions, which is really quite shocking.

**If you do decide to view the entire gallery, you can witness our exploits in Pinteresting.  I found this picture during some period of brain-rotting Pinterest-surfing, and decided I needed to recreate it with the P-nut at 3 months, 6 months, and 12 months.

I ordered some donut onesies from my dear friend Ali's newest business venture. I got some clothesline ribbon and some clothespins.  I called Nesie to come snap a quick picture.  EASY!
Except not. 
I do not know what size those onesies in the example picture are, but Parker in no way shape or form will fit into a onesie the size of that first one at 3 (technically 4) months.  He might have at 3 to 4 months gestation, but certainly not now!  I ended up ordering 3 month, 6 month, 12 month, and 24 month sized onesies to accomodate the not-so-petite P-nut, and the size differentiation is somewhat lost.
We also did not quite know how to prop him up, as he obviously cannot sit up by himself yet, so we sort of smushed him into a Boppy/down comforter nest.  No sweet little criss-cross-applesauce like in the example, mostly because that baby is SIX MONTHS OLDER.

The "I can do that!" Pinterest monster strikes again.
Once she got home and processed everything, Nesie did not love the clothesline pictures we got and asked if we could redo them.  We tried again yesterday.  Bless Nesie's heart. If I was her, I would have said, "Abby, I love you and you are my family.  Now step away from the Pinterest picture."

Love her.

**Every so often, I am amazed all over again at the generosity and kindness people have shown us throughout our ordeal with Parker. Emily, owner of Holden's Hut, did a fundraiser for Parker when we were in the hospital.  It recently came to my attention that in the process of that fundraiser, someone made a sizable donation for our family in return for 20 bibs that were donated to a local charity that reaches out to teen moms.  Now that we're on the other side, it is my sincerest hope that we can provide support to other families in need, whatever their circumstances.  I will forever have a soft spot in my heart for CHOA and the NICU, but it is important to me to pay forward the support we have gotten during our trial.  It is exceptionally important to me to raise two boys who have grateful hearts and generous spirits.  Lord, please help me to be the model to them that my mother was to me!

**It pleases me every time I can say things like "two boys", or "how are the boys?", or "I need this for my boys".  My heart literally pitter-patters when I stop and think about what it means.  I worry, sometimes, that my prayers of gratitude are insufficient.  Still, God knows my heart and He understands what I am trying to say, even when it comes out "Thank you times a million."

**It pleases me that I now have two sweet pictures of two sweet boys in the silliest suit imaginable.  Being a good Southern girl, I appreciate the beauty of a Feltman Brothers bubble and knee socks.  Hubs does not.

**CrossFit Mamas hates me, and as a result I have done 400 lunges in 24 hours.  I also have a nice carpet burn on my face from when my arms gave out during the "100 pushups" part.  *I use the term "pushups" loosely.  I have the upper body strength of a t-rex.*

**Speaking of, one of the greatest marriage therapy moments in our house is my complete inability to not turn on Jurassic Park when it is on, which it is at any given moment.  This also applies to Jurassic Park 3, which is on right now in the background.  Jurassic Park 2 does not count, as it marks a dark time in film making.  I don't know why I will watch them over and over, but I have somehow gotten Jeremiah on board.  Mike has had enough and leaves the room whenever it comes on.  This happens approximately 3 times a week. If he leaves me, I blame you, Spike Channel.

That is all.