Wednesday, January 30, 2013

Who's kids like mashed potatoes? Not mine...

Sunday, January 27, 2013

That feeling of helplessness

If you've followed the blog for a while, you're well aware of the ups and downs we have had with Will's health.  Between sinus surgeries, in-patient stays, and seizures, we certainly are no stranger to medical drama. 

But for the past month or so, we've been dealing with a new foe.  Something so common yet so overwhelming and painful, that we're sort of at a loss for how to help Will.

Yes, I'm talking about gas.

Embarrassing, yes.  Necessary, yes.  Painful, most definitely yes.

Though we have changed nothing with Will's diet, medications, fiber intake, or exercise regime, several times a week, Will goes from being a happy, giggly kid to crying, and clearly being in pain.  Big tears roll down his cheeks.  And sitting in his wheelchair, there's really nothing that he can do to help himself.

So we've taken to laying him down on the floor and massaging his belly.  He usually cries through this too, until you hit the right spot.  Honestly, his intestines sound like Snap Crackle and Pop when you're pushing on them.  Ouch. 

After a while, he's generally back in a good mood, the painful gas having passed.  Usually this is just once a day, but if you can't get the gas out, he could be in pain and crying for a good hour.  It is heart wrenching, but we haven't been able to figure out what else we can do for him.

Of course there are more medications that we can put him on - but he's on so many already.  He usually eats a fair share of yogurt and applesauce each day.  He gets up to walk and stays in his stander for several hours per day.  We also lay him on the floor for an hour a day to kick around and play. 

What else is there?  Embarrassingly, yes... I am asking... what else can be done to pass the gas? 

Wednesday, January 23, 2013


We've had an up and down winter here in central NC.  Two weeks ago, we were outside in shorts playing cornhole and jumping in bouncy houses.  Today, it was 22 degrees outside when we put Will on the bus.  So weird.

Our boys have a funny relationship with winter.  Unlike Nate and me, they've never had to deal with the chill and reality of Rochester NY January blizzards.  A typical winter to the young NC Slaviks is when they have to wear a coat in the morning, but can probably be outside in a sweatshirt in the afternoon.  Putting on gloves is pretty infrequent, to the point where it is a game to see who can get their gloves on the fastest. 

Will enjoys being outside in cold weather, though he gags when we put on his coat (not sure why?).  His eyes get very wide and a smile breaks across his face when we leave the house.  He squeals the loudest when the temperature is below freezing.  He tries to eat the gloves off his hands.  Unfortunately because Will spends a lot of time sitting, he has pretty poor circulation in his legs.  Despite our best efforts to keep him warm with blankets and socks, his feet get very cold - even on a regular day with our house temperature set at 72 degrees, his hands and feet are like ice!   So although he likes cold weather, we don't spend too much time out there to keep him healthy.

Each morning this week, before we depart for Luke's bus stop, Matt is excited to put on his gloves, hat and coat.  He's excited at the prospect of standing at the bus stop with Luke.  But then we get out of the car.  His nose starts to run.  All he can say is "Mommy, I'm so COWD."  Repeatedly.  He demands to be picked up.  He wraps his body tightly around my torso and buries his face in my scarf.  Runny nose at all.  He's generally happy when Luke's bus finally arrives and he can get into the warm, waiting van.

My funny cold weather story involves Luke.  Tonight as Nate was giving the boys a bath, I was cleaning up from dinner.  Luke came out in his big wrap towel.  I had let Otis out into the backyard beforehand, and he came up to the door to be let in.  Without thinking and because I was up to my elbows in soapy water, I asked Luke to let Otis in. 

"But Mommy, its so cold outside."

I didn't look up - "Buddy, please, just let him in really quickly."

"But MOMMY.  It's REALLY cold outside."

I looked up to protest, and realized that he'd purposely dropped his towel on the floor.  He was standing at the back door with no clothes on, opening the door just a crack, and closing it quickly because the 32 degree air was REALLY cold.

I couldn't help but laugh out loud.  It's no secret that the Slavik boys like to run around naked before and after bath time.  It just didn't occur to me that Luke might have attempted to go outside in January with nothing on.  Maybe February, when its back to being 70 degrees again...

Sunday, January 20, 2013

I'm usually a proponent of a firm bedtime but...

... its kind of hard when Luke just grasped the rules and excitement of football and the AFC Championship game was on.

We've always been a football family, but before this past season, none of the boys really paid attention. All of a sudden this year, Luke was very into watching football. He would sit there and watch a game with us, asking relevant and informed questions, and counting down the clock.  He gets so excited for any and all touchdowns that he inadvertently cheers when the other team scores a touchdown, and then checks himself after the fact.

It is truly a treat to watch Luke when he is watching ESPN's SportsCenter on Monday morning, after a touchdown-filled weekend of football.  He doesn't sit down.  Because it is a highlights show and they're usually either showing touchdowns or turnovers, Luke is typically standing up and cheering.  No matter the team. 

Luke was broken hearted when his favorite team, the NY Giants (Nate's team) didn't make the playoffs.  He was practically in tears when RG3 went out of the Redskins game (Luke's second favorite team; my team) and they didn't advance past the Wildcard round.  We can usually count on the Green Bay Packers for a good playoff run (Luke's third favorite team; Opa's team), however they didn't make it past the Divisional Championships.

But just when Luke had almost lost hope on teams to cheer for, the Baltimore Ravens (Luke's 4th favorite team) rallied around Ray Lewis and made it to the AFC Championship.

As the clock was nearing 8pm (typical bedtime) tonight, Luke kept telling me that he wasn't tired.  I didn't have the heart to make him go to bed.  He's so excited about the game.  Every 20 minutes, he'd see me look at the clock and reiterate "see Mommy, I am still not tired!"  He'd cheer for every Ravens score (he knew better than to cheer for the Patriots...).  He'd ask relevant questions about penalties.  He cheered each time Tom Brady got picked off.

With about 2 minutes left in the game, Luke let out a big yawn.  Nate took him to bed, and he didn't fight it - I think he was confident that his 4th favorite team would pull out the win.

Of course that won't stop him from reliving all the scoring excitement again tomorrow morning on SportsCenter!  Now I just have to figure out how to explain to him that after the SuperBowl, NFL football doesn't come back on TV again until August...

Monday, January 14, 2013

Winter break

Luke has been off of school since a few of days before Christmas. We realized a few days ago that the packet of homework that Luke's teacher sent home with him - the one that needs to be complete when he goes back next week - had barely been touched.   Time to get back into the school swing of things.

Luke was actually excited to do some school work - in between our play times, enjoying the random 70 degree days outside this past weekend.  He happily grabbed his crayons, pencil, glue stick and scissors and made his way to the kitchen table.

"Lay it on me, Mommy."  Clearly he was serious.

He slowly but deliberately made his way through the first sheet.  Coloring within the lines like it was his job.

Once he finished that page, he moved on to the next.  A word find.  Luke is a very good reader, and he gets a kick out of finding words that he can read all around him (for instance: "What is Bud Light?" and "The bouncy house directions say you should not leave me alone.").  I don't know if he has ever done a word find before... but gauging by his level of excitement in completing this one, it surely will not be his last.

Never to be outdone by his big brother or miss an opportunity to play with scissors, Matthew quickly figured out what was happening and pulled up a chair. He found some extra paper, snagged Luke's unused scissors, and snipped away on his paper... making the smallest bits of white paper confetti possible. Like so small a vacuum cleaner doesn't really help clean up the mess masterpiece (note the pinkie on his cutting hand).

Every now and again, he would stop snipping. He would sit back and stare intently at his work for a moment, decide where he wanted to cut next, and then attack.

If only all homework were this fun!

Thursday, January 10, 2013

After the buzz

And just like that, Christmas morning had passed.  Music had been made, the bouncy house and tee pee had been thoroughly broken in. The cornhole board had been properly tested for strength and durability (thanks Cornhole Family!).

Refuse was cleaned. A family breakfast was enjoyed. And over the slow gaining hum of the day, things started to go a little crazy, as things some times go when you have a couple of really excited little boys.  It was time to get out of the house and get rid of some energy before we started to vibrate to Matt's sing-song version of the first verse of Jingle Bells over and over and over again.

We finally made it to the Museum of Life and Science in Durham!  This has been a hope of mine for a while, something I wanted the boys to experience (after many recommendations) and share with grandparents - and one of my unacheived goals from Summer 2012!

The park is mostly outdoors, but since the days had been hovering around 45 degrees, that wasn't much of a problem (in fact, we didn't make it to any of the indoor exhibits).  What a cool place, and totally accessible and involved for all of us regardless of age.

Checking out the butterfly garden

Walk with the Dinosaurs! (and digging for fossils)

Wolves and bears and lemurs, oh my! And a cow...

And there was still more to see!  But after all this fun, we were tired and headed out.  Success!  No more craziness in the house - just dinner, baths and bedtime.  Definitely going back this spirng to see the World of Water exhibit and ride the train!!  Who wants to join us?

Tuesday, January 8, 2013

Oh Santa, how we prepared for you...

When I was growing up, I always wrote letters to Santa on Christmas Eve.  My brother and I always left him cookies and milk.  When I woke up on Christmas morning, nothing thrilled me more than seeing bites taken out of my cookies and reading the notes that the big guy left for me.  It didn't occur to me until I was about 8 that Santa's handwriting looked an awful lot like my dad's.

Last year, we started inviting friends and family over to our house in the days leading up to Christmas, to write letters to Santa and decorate sugar cookies.  We have cider and hot chocolate.  We listen to Christmas carols.  We laugh and have a good time.

This year, we continued the tradition.  We made new friends this year and expanded our guest list. We made more cookies.  We got cooler sparkles.  We finally started using gel food coloring and actually had red icing instead of dark pink icing.  We drank cider and hot chocolate.  We had a snowball fight.  We laughed. The house felt warm and festive... helped in part to 60 degree weather outside... the spirit of a Southern Christmas was everywhere!

We made new friends (who happen to think sneezing, coughing, and the sound of dropping pots and pans are the most hilarious thing on the planet - just like Will!)

We ensured that Santa would have a sugar rush.

We spanned 3 generations of Santa-loving friends in 2 families!

We practiced our handwriting and gave the big guy a few words of encouragement to keep us on the Nice List.

We slowed down for just a few seconds to decorate with old friends.

We played carefully with the Polar Express.

We smiled.

We marveled at the maturity, love, patience, kindness, empathy and fun that older siblings give to their world.

We had a two story tall snowball fight. Ladders were required for snowball retrieval.

We laughed. Oh, how we laughed. Big belly laughs. Christmas-is-here-and-I-love-you-so-much laughs.

Sunday, January 6, 2013


The boys really started to enjoy trains this year, so for Christmas we decided we wanted to find them a train table. Back in September, Nate was scouring Craigslist every day and found a lightly used one for less than $75 with all tracks and trains included.  We were amazed - have you ever seen what they cost new?!

So after the boys went to bed one night, Nate brought the table inside and we stashed it in the attic.  And there it sat until Christmas Eve, covered in a sheet. We were excited to bring it out and set it up.  Thankfully the previous owners had numbered the track pieces and Nate had taken a picture of how the tracks were set up.  Otherwise, Santa would have had a really long night ahead of him.

There are several parts of the table that make noise when trains go across them - a rackety bridge sound, railroad crossing, a steam engine.  Nate had the forethought to set a train up ever so close to one of the noisemaking parts.  A booby trap of sorts.

We went to sleep.  I barely slept.  I was so excited for Luke and Matt to sneak out of their rooms and find the train table.  Luke typically wakes up around 5:45, and Matt shortly thereafter (we usually have to wake Will up around 7:30).  The clock hit 5:30 and I jumped out of bed to switch on the Christmas tree nights.

5:45 on the nose... and the train table started to make noise.  There was an immediate gasp and then a giggle from the living room.  We got a good laugh from that.

We snuck out to the living room quietly.  I snapped a single shot of Luke and Matt before they saw us and the quiet magic was gone.

Oh... how I love Christmas through their eyes!

Wednesday, January 2, 2013

Sparkly New Year

If you don't like feet, you're going to hate this blog post.

Just before Thanksgiving, Luke really turned the corner with school and his after school program.  He seemed to really start liking things at school and the counselors that he played with afterwards.  His daily behavior reports from both were great!

When he has good behavior at after school, they reward him with play money ("bucks") that can be exchanged at the end of the week for a prize.  The better you are, the more bucks you get, and the better your prize.  Bad week - get a pencil.  Good week - get a toy car.  You get the idea.

Luke hadn't gotten any bucks during the first two months of school.  He seemed upset about it, but couldn't seem to get the hang of how to behave properly.  But something finally clicked for him in late November, and all of a sudden, the kid had some bucks!  Not many at first (we got a lot of pencils), but over the weeks, he was doing really well.  Rolling in the dough.

On one particular Friday afternoon, Luke came home with a sneaky look on his face.  Nate prompted him to tell me why he was so excited.

"Mommy, I turned in 5 whole bucks today and I got something for you."

Good thing I like pencils.  A lot.

Actually, I am just kidding.  From the hidden hand behind his back came a little bottle of silver nail polish.

"I got this for you because I know you like your nails to look pretty.  Can we paint your toenails?"

I was so taken aback!  Luke loves his pencils and other silly prizes when he trades in his bucks, so for him to use his hard earned money to get something for me was very touching.

We didn't have the opportunity to paint my nails for several weeks.  The polish sat on my dresser, and he would occasionally point to it and remind me that we had a paint date.

On New Years Day, the time was right.  Luke was excited to help me paint my toes.  We sat down, I showed him how to hold the brush (his occupational therapist would be so proud!).  He did a couple and sat back with a grin to admire his work.


We hope you're having a sparkly New Year! I have a ton of photos and stories to share from Christmas time.  I will post those soon.  It struck me as funny that with days off of work, I didn't have a lot of time to sit down and write blog posts!  Between family and fun and catching up on some much needed sleep, I rarely touched our computer.  I suppose it was the best kind of distraction.