Hello, Cincinnati Children's

WHAT. A. DAY. I thought to myself that I should write this down while it’s fresh, and then realized that I don’t have a single brain cell that feels “fresh.”  All outta those after this whirlwind 8 hours. So, after a night to sleep it out, I can now (halfway) think through all of yesterday, but I am 1000% sure there will be rambling.

Shortly after Dex came home from the NICU, we started feeling a little tremor in his feet, usually while eating a bottle or while asleep. We learned at his 4 month check up that this is called ankle clonus, and while his pediatrician chalked it up to his immature neurological system due to prematurity, she shared that persistent clonus can be an indicator of cerebral palsy. A pediatric neurologist could evaluate him, but the local group is currently on a 6 month wait for a new appointment. So, I asked if we could go ahead and get that process started so that the appointment would be in place when we reached a time that the clonus should be resolved. She agreed, but offered to send us to UVA so that the wait wouldn’t be as long. UVA could see us in September. 

Well, over the course of the few weeks after his 4 week appointment, we had Dex under a microscope. Which leg did he just kick with?  Why are his arms so tight?  He’s so much stiffer than our girls were, this can’t be typical. A therapist evaluating him mentioned him being jerky and high toned, and then it was all we could see. All of these can be because of his prematurity or all of these could be signs of cerebral palsy. 

The girls seeing us off!  They were more worried about this trip than when we went to Europe for 12 days.  I think it had something to do with that baby.  :)

So much of our joy in this delight of a baby was being robbed. I couldn’t appreciate how strong our little fighter is because I just worried he was too strong. So at the advice of my aunt who is a wonderful physician, we contacted Cincinnati Children’s to see how quickly he could be evaluated. And it was days. It was also so comforting that CCH has a world class pediatric neurology department (currently ranked #2 in the US), and so we knew Dex would be in great hands. So, we decided to make the trip to Cincy. 

Which brings us to yesterday.  This one day epitomizes the journey we have had over the last nine months— a day and a burden that feels crushing and yet it is made lighter by the absolute kindness of others.  People are good. And they want to help. And it feels crazy and so appreciated. So Cliff's Notes version, a spouse of Sam’s coworker knew a pilot who flies for Angel Flight, and they reached out and offered to fly us privately to Cincinnati for Dex’s appointment. Did your jaw just drop?  Ours did. We were planning to drive the 14 hour round trip over the course of a weekend or few days. Now, here was someone using their time and resources to bear the travel and cost load for us. No more hotel over multiple days, no more extensive childcare worked out for our girls--we could be to Cincinnati in an hour and come back that same day.  

I am an apprehensive flyer, but knew that this would make the trip so much more bearable for Dex, especially with him still doing so well off of oxygen.  But, as we pulled in to the parking lot by the hangar to board our plane, I almost lost my nerve.  Sam got so much entertainment out of anxiety due to the itty, bitty plane and the horrible weather.  Thunderstorms and rain littered most of the morning.  He may have been most amused by the last will and testament video I sent my sister after this plea.

I hope to take this boy on half the adventures he's already surprised me with.  But, by the absolute grace of God, that minivan with a propeller was not our plane. BLESS.  And our takeoff time of 11:00 a.m. provided the only break in rain for hours.  All my fears dissipated when we walked into the hangar to meet our generous pilot Tom and copilot George and saw a beautiful, shiny, brand new plane.  It is likely the only pressurized plane in Angel Flight's fleet (which made all the difference in determining Dex's flight worthiness), and boy it was beautiful.  When we boarded, it smelled like a new car, and Tom gave us an easy, one hour flight that was smoother than any commercial flight and landed right into Lunken Field with a private Waypoint Aviation terminal that looked like a swanky hotel lobby. 

Dex took his very first flight, and then hopped in to his very first Uber.  We were dropped off in front of Cincinnati Children's Hospital about 20 minutes later, and were all checked in to his appointment.  I can't say enough how grateful I am that we decided to come.



For the last three weeks, my biggest dream was to go to Cincinnati and have Dr. Vawter-Lee say that she hoped we got zoo tickets or something because there was no reason he needed to be seen.  She didn't say that.  But, her assessment of him felt pretty darn close.  Dex brought his A game to the appointment.  I almost didn't recognize him!  She was not able to elicit clonus in either foot (something the pediatrician was able to do easily in June), all of his other reflexes looked normal, she was pleased with his muscle tone, and only made note of the tightness in his right arm.  She wasn't overly concerned with his Grade 1 brain bleeds, but agreed that an MRI may be needed if his right arm didn't respond to the recommended physical therapy as it could potentially be affecting by CP.  Otherwise, she said our baby looked great.  He was seen just 6 days before by another provider noted how high his muscle tone is.  With a week of us stretching him at home, she said his tone looked really good.  At first, she had concerns with him already rolling over (he is ahead of the game on that by every measure-- his chronological age or his adjusted age).  Cerebral palsy babies often roll extremely early because of spasticity.  But, as she laid him on his belly, he popped his head up like the sweetest baby cobra you've ever seen, looked around, pushed his arms out, and rolled over, and her jaw dropped.  She explained that CP babies often do a "log roll" with very little head lifting, but with a big arching of back and flipping over.  He pushes himself over with his head and arms.  And maybe a little help from those ears.  :)  She said it was probably all his time on my chest in the NICU and some added neck strength from trying to avoid his severe reflux.

She shared that he is at a greater risk for mild developmental delay because of his Grade 1 bleeds and also because of his extended oxygen requirement.  BUT NOT SEVERE.  While she still had concerns about his right arm, she said his other limbs look great, so we will follow up in three months.

Dr. Vawter-Lee encouraged us to always seek answers for our little guy, not just accept "oh, it's because he's a preemie," even if that may very well be why. Stuff gets missed that way.  (I think Sam may have laughed in his head and said, "Have you met my wife?  Crazy mama bear extraordinaire?)  She left the room and I cried putting our little guy back in his carrier.  Another miracle over my little boy.  Of course, as soon as we left the building to get in our Uber, I saw that his foot was tremoring in his sleep.  THAT BOY.  I know our battles for him and with him aren't over, but I am writing this post as a reminder to myself.  When I am most afraid for my baby, when I'm reading medical journals at 2:30 a.m., when I am discouraged by the odds he faces, this is my reminder that my little "man of prayer" is a mighty warrior and the Lord has big plans for him. 

By 7:30 that evening, we were safely back at our car at the Roanoke Airport.  What a day.  A day full of blessing and grace for our family.

A Poetry Program

It was a sweet morning of haikus, diamantés, couplets, and cinquains (huh?). Second grade poetry at its finest!

Each kiddo had a book of poetry, written by them over the course of the year. They were all allowed to read one of their poems in front of their class and parents. It is no surprise that A) Harper wrote a poem about Dex, and B) that’s the one she chose to share. 

While Kasey watched Dex (no way he’s ready for full on school germs), Willa and I snuck over to Clearbrook to hear our sweet girl mumble five lines from her desk. 😆

It’s always a treat to support Harper and be in her class.  She had tears in her eyes as Willa and I left, so I know it means so much to her, too. May it always be so!

Willa’s Preschool Program

If you’ve been within a hundred yards of Willa Kate over the last month, you’ve been invited to her preschool program. That girl has been recruiting hard for an audience, and now we can see why!  She even lobbied so well that I even let Harper skip school to support her sister.  That girl is gonna be a heck of a salesperson.  

This year finishes our sixth year at Cave Spring Baptist Preschool. Bless them. Six years of Fertittas. I congratulated them on a two year break before our little guy pops on to the preschool scene. 

This year has been my least involved, most forgetful year (when was I supposed to make Play Doh?  Can I make it in the hospital sink?), but we were met with nothing but grace. Mrs. Caldwell loved our Willa and our family so well. She hugged me tightly at the Christmas program, where I sat in tears after a scare that morning with Brother, sure we’d be losing him soon. In the same fellowship hall, we both hugged again remembering that day four months before, wishing I could go back and tell that devastated mama that she would be at the spring program, holding the hand of her oldest while smiling at her five-year-old and pushing around a stroller with everything but a crib for her precious, perfect boy. God is so good. 

I don’t have pretty pictures from the day.  I think some parents may have camped out the night before to save all the seats for their 47 extended family members coming so space was limited, and I wanted to hide Dex a bit to keep him out of the crowd. So my iPhone pics from 50 yards away may not be the best. Sorry, Wills. But, I promise, we are just as proud!  Kasey and Mimi rounded out the WKF Fan Club, and she was so glad to have them there.

 After the program, we didn’t do the picnic at the church pavilion afterward (5 person family + 3 hours sleep= 0 desire to pack a picnic lunch). Instead, we went over the Macados for a celebratory graduation lunch. While we were eating, I bragged to her about what Mrs. Caldwell share with me about her. She’s the class leader— the first to try something new, the first to follow directions. She’s obedient and is kind to her classmates. Even though I wondered where that girl goes at home 😆, I told her how proud I am of her working hard and being kind. Work hard and be nice to people. That about sums it up!

Harper's TV Debut

Anyone who knows Harper well isn't surprised that her news debut had to do with her inability to sit still in a seat!  Ha. 

Ninety-nine percent of the time, Harper is dressed to the nines for school.  Not because I care (though, let's be real.  Having a little girl is fun.), but because she's such a little diva when it comes to her clothes and accessories.  But, on this particular day, I had to leave super early for work and she had gym that day, so I laid out an easy, comfortable outfit with some tennis shoes for the next day.  We went ahead and put her hair in a pony tail the night before, and I found out when I went to check on her before I went to bed that she had gone ahead and put on her clothes for school and was sleeping in them.  So, naturally, she came home from school the next day, and said, "Mom!  I'm going to be on tv.  The news was at my school today."

Of course. 

At first, I thought she was kidding, but an email came home from her teacher saying that the class's alternative seating options would be featured on the local news.  So, here is sweet Harper.  Telling us about how it's hard to sit in a seat, and it's cool to have options.  I love that she was brave enough to share about her classroom.  Mom always wanted me to be on the news as a meteorologist.  Maybe it'll be her granddaughter instead. 

The Salem Fair

So, we've finally reached a really big milestone in our family.  Like huge.  Almost life-changing. 

OUR GIRLS CAN RIDE THE LITTLE RIDES AT THE FAIR ALL BY THEMSELVES!

Every parent who's ever crammed their legs inside of this flying banana knows exactly how exciting that is.  :)

 

 

Every time we go to the Salem Fair (and at this point, it's an annual tradition), I wonder why on earth we subject ourselves to the dirty, germy, where-did-these-people-come-from-ness of the Fair.  But, every year (and maybe this year the most), our girls love it.  They laugh, they eat, and they ride their little hearts out.  When I finally left with Willa (Sam stayed even longer with the "big girls" Harper and Sydney), it was 10:00.  AT NIGHT.  And between the lack of nap and the overdose of funnel cake, she was hilarious in her emotional departure.  "Byyyyyyyye, Fair!  I miss my fair!!"

Rainy Fourth of July

a 1970s Fourth of July

So, this year, we had to have the worst Independence Day weather of all time.  It literally rained the entiiiiiiire day.  The good news is that we spent the day adult-ing.  Yes, on our day off from work, we (we meaning Sam, although I did provide periodic laughing, which I'm sure was super helpful)installed our new microwave, since our other one randomly stopped working last week.  Thanks, Sam, for your handiwork.  xoxo

It's a good thing we had friends and family over on Saturday to meet our mandatory Fourth of July weekend cookout quota!  Corrie, Jeremy, Rachel, Mike and his daughters, and Chris came over and we grilled out, played cornhole, and lit sparklers.

 

When it became pretty clear that the weather was going to stay monsoon status, the sweet Quesenberrys invited us over to hangout at their house and eat together before trying to catch some fireworks.  All of the local fireworks were canceled (yes, the weather was that bad), except for the Salem Fair's.  Good news for us, since that's the one we usually try to catch. 

After hanging out in Salem at the Quesenberrys for a bit, we drove over to Lakeside Baptist to sit in the parking lot and try to see the fireworks.  The Cromers and Fertittas met us over there, and hooray, it didn't rain for an hour or so!  But, it was still super cloudy.  As we were hanging out waiting for the fireworks, some neighbors of the church started letting off some huge ground-to-air fireworks, and the kids were so excited about those.  And, I felt like maybe we should tip them since it ended up being to foggy from the rain to see the fair fireworks over the trees.  It was nice that our kids didn't know any different since the neighborhood show was so good. 

So, there was nothing spectacular about this holiday weekend.  Just lots of watermelon, fireworks, friends, and family. 

Hi there, Virginia Beach!

What a super fun, semi last minute trip this turned out to be!  It all started with Sam going up for two days for a softball tournament, and instead it morphed into a five day yay-school-is-out vacation.  So, basically if I'm involved, it's turning into a vacation.  Haha. 

Originally, Sam was just going to go up for the weekend and split a cheap hotel with a bunch of the softball guys, but when I saw the date and realized it was the weekend after Harper's last day of school, I thought it may be fun to tag along.   It seemed like a fun way to celebrate our school year survival.  Then, it totally "if you give a mouse a cookie"-ed.  If we are going to drive that far (around 5 hours), I may as well take off Friday.  And if I'm going to take off Friday, we should probably just drive down Thursday night to make a full day of it on Friday.  And then, if we're going to pay for a hotel room for Thursday night, we should just go up early on Thursday morning.  And then, after stumbling across a concert on Sunday night, we opted to stay another night and leave on Monday afternoon.  So, suddenly, that weekend trip turned into five full, fun days. 

I could. not. get over how expensive hotels were for the boardwalk area of Virginia Beach.  Like $419 a night for a Holiday Inn crazy.  I'm not sure if it was because of the huge softball tournament or it being the first real "summer" weekend, but I had major sticker shock.  I wasn't planning on this weekend being as much as a cruise.  And thankfully, with some serious travel site stalking, I was finally able to Hotwire a deal for an oceanfront three star hotel for around $200 a night after taxes.  I'm basically a detective when it comes to Hotwire, so I had figured out before I booked that based on the amenities and star rating listed, it had to be the Ramada, and I was ok with that, so away we booked.

Mahpalooza!

Most of the softball team stayed inland at a cheaper hotel (and most also didn't have kids with them), but I knew with Sam away for two of the days at a softball tournament, I really didn't want to have to pack up all our beach stuff, drive 30 minutes, find parking, unpack the car while making sure my kids don't run into traffic, walk a half mile with 25 pounds of beach chairs/towels/cooler, and finally sit down in front of the water just in time for one of the girls to need to pee.  So, we "splurged" a little and went for oceanfront, and I am SO GLAD we did.  It turned out to be in a super location with a live music festival that played each night on a little pavilion right outside our room.

We had an easy (though long) drive over there (wait a minute.  That may be the first time since Willa's birth that I've ever written that.), and got there around 1 p.m.  Our room was ready, so we were down on the beach by 1:30 and got in a full five hours of beach time on Thursday.  The girls were super excited to see the ocean again, even if it was a bit cooler than they remembered.  :)

 

 

An hour or so of that may have been an afternoon nap.  :)  That worked out well because then the little ladies were up for a fun evening of seafood, dancing, and playground playing. 

 

Harper and Dad at dinner

WK and Mama at dinner

She's waited a year to eat $25 worth of seafood!

  

As we walked back to our room on the boardwalk, Harper spotted a bike stand right outside our hotel.  She begged and begged and begged and begged to rent a four person surry.  We told her we would first thing in the morning, and so don't you know, at 7:30 a.m., sweet girl was reminding us that we promised her we'd give it a try.

 

You know those things that seem like a good idea and then turn out to be absolutely miserable??  Yeah, this was one of them.  Sam was too tall to extend his legs fully to pedal and I wasn't quite tall enough to sit with my back against the seat, so we basically hated our lives for the entire 42 minutes that we were in possession of this thing.  We couldn't wait to turn that bad boy back in, and so we did.  A full 18 minutes early.

By the time we finished up with our biking excursion and had some breakfast, Rachel, Jennifer, and Mike arrived and so it was time to get our beach day of fun started.  Woohoo!  The girls could NOT WAIT until Easton and Emerson arrived. 

 

The majority of the softball team arrived by lunch, and so we had a marathon day on the beach with the little kids (and the big, mid thirties kids) playing all day long.  The Quesenberrys came up to our room to shower and get ready and joined us for dinner.  It has been so fun seeing these kids grow up together.

Fertitta/Quesenberry Beach Trip 2014 and Beach Trip 2016

 

Sam left for softball early on Saturday, but most of the ladies and all the moms opted for a beach day instead of a day at the field.  I know, good choice.  But first, breakfast.  We found a little café across the street that had some outdoor seating, so it became my morning routine with the girls. 

 

 

  

  

 

 

Another fun dinner out was finished off with some dancing at Mahpalooza outside our hotel. 

Sunday was another softball day for them, beach day for us, but the real fun happened on Sunday night.  Last week, Sam and I were driving in the car with the girls talking about people we'd like to see in concert.  He just haphazardly said Twenty One Pilots, so while he was driving, I pulled up their tour schedule.  What the what?!  They were playing at the Portsmouth Pavilion (the next town over) the weekend that we were planning to be in VA Beach.  So, I looked up tickets and booked them.  Corrie and Jeremy were so super sweet to agree to keep our kiddos while we went and had a fun date night.

Now, up until this point, we hadn't seen a drop of rain, so I wasn't too worried about our outdoor concert, but while we were eating at Mahi Mah's before taking the girls to the Cromers, and it started pouring.  Ugh. 

 

It rained the whole Uber ride over the Pavilion, but as soon as we pulled in, it cleared up and didn't rain another drop the entire night.  And the concert was amazing.  So, so good.  We are already looking to see them again!  We didn't get back until midnight because the Uber rates were in surge pricing-- all the way up to 4.3x at one point.  But, it was worth it, and such a fun date.  Except for feeling like the old people at a concert. Haha.

Our last day on the beach was super low key.  We ate breakfast (hello, again Sunnyside!), packed up, and went down to the ocean for a few hours.  The girls sure soaked up their last bit of sunshine, but it was insanely windy.  New meaning to beach hair.

Our drive home took forever, but it wasn't so bad.  The girls jammed out to some Twenty One Pilots with us.  It was "just a weekend trip," but the sun and sand sure made it feel like a vacation, even if (despite Harper's disbelief), we never left the state.