Thursday, March 29, 2012

Calm before the storm

We are just over 2 weeks away from Will's admission into the Johns Hopkins Epilepsy Monitoring Unit.  The time is going kind of slowly, I think mostly because I am excited to find out if and what our next steps are on this battle with seizures.  There are also a lot of logistical issues to work out with our coverage plan, and not knowing how long we'll be there and the duration of that upheaval kind of adds to the nervousness.

After I found the photo of Will and Luke in their 2007 Easter finest, I sat in front of the computer and clicked through some of the NICU photos with Nate.  We didn't say much.  As much as I have written about being strong and getting over the fear of that time, those photos still get to me.  I don't know what emotion it actually is that I am feeling.  I just know that in a matter of seconds, I am sniffling and wiping away tears.  There is no sobbing.  Just sadness, I guess.  Memories of the harsh reality.

I have the hardest time with the before and after photos of Will and Luke's first shunt surgery.  The day of surgery, the neurosurgeons had written YES on each boy's head in black permanent marker.  Luke's YES was on the right side of his head, Will's on the left.  The locations of their future shunts.  The permanent bumpy reminders of prematurity. 

After surgery, their heads were wrapped in gauze, they were still affected by anesthesia, and their bellies were yellow from the betadine wash.  We snapped these photos through teary eyes.  These are photos that we've shared with few, and that I still am not ready to share with the world.  They're raw.  They're pain. 

And most of all, if this EMU visit indicates that Will is a candidate for epilepsy surgery, they're an indication of what his future will look like.  Gauzed wrapped head.  Medically induced coma.  Beeps.  Monitors.  Surgery.  Large scars and stitches. 

From everyone whom I have talked with who has had this surgery, they've never regretted it.  They don't remember the first couple of days after surgery, when their speech was distorted from the trauma in their brain.  They don't remember the bed pans or the pain meds or the neurologic tests that they underwent once every hour.  But what they do remember is the lightness that they felt as they were able to be weaned off of their heavy anti-epileptic medication again.  All those side effects lessening.  Freedom.

This is what we want for Will.  Freedom from seizures.  Freedom to sleep peacefully.  To be off of these medications, or at least be on lower doses of them.  Freedom for his brain to develop further and allow him to learn new sounds and who knows what else! 

We just have to get through these next couple of steps.  And realize that though this is a scary step, it is positive.  It gets us closer to freeing Will's brain from the electrical firestorm that holds him back. This surgery is not a cure for his cerebral palsy. Post-op, he will continue to be in a wheelchair and have muscle spasticity issues. But with the lack of seizures, his brain and development will be freed to grow.

There will be other photos.  There will be more fear and tears and prayers abounding in the weeks and months to come.  That's ok.  As fearful as we were of those shunts, and that surgery marring the heads of our little little boys, those shunts saved their lives.  They might not have beautiful scalps.  You can see huge 'J' shaped scars when their hair is cut short.  But they themselves are beautiful.  No matter what those post-op photos might look like.

Tuesday, March 27, 2012

Puddle Jumper

What's the best thing about torrential amounts of rain in a short period of time?  If you're Matthew, it is the puddles!  We made sure the sky was long since clear of threatening clouds and lightening, stripped off his shoes, and he was happier than can be, jumping in all our backyard puddles.  Luke looked on from the dry, puddle-less kitchen table.  No way, no how was he soiling his feet with "dirty water and gooey mud." And so are the differences amongst brothers... 

Monday, March 26, 2012

Stop in my tracks

We got a notice in the mail about a week ago that said our community yard sale is scheduled for April 28.  Happy birthday to me!  I've been waiting for the yard sale... I need a reason to clean out a lot of.. ahem... stuff.  The attic, while good at hiding years of boxes, is starting to become impassable.  Though I can think of better ways to spend my 33rd birthday, the opportunity to purge years of quasi-hoarding habits comes in about 14th.

I think we're finally ready to part with those old college textbooks that we spent so much money on and swore we'd use once we got "real jobs," but haven't cracked open since 2000.  And dang, those things are heavy to tote around (Rochester to Syracuse to Binghamton to Durham to Raleigh to WF... is that possible?  6 moves?).

It is time to get rid of old kitchen dishes and gadgets... the ones with small chips, the mismatched sets of silverware, and the pots and pans we were given when we each still had our own apartments.

The purge feels good.  It sure is a lot of work to go through this many boxes, and breath this much dust.  I've enjoyed the past couple of evenings, going through boxes that are labeled as "Nancy Drew books" and actually contain dozens of balls of yard and unfinished crocheted blankets.  I never know what I am going to find. 

I was churning happily through boxes, organizing things into "keep," "sell," and "garbage" piles, going through an aptly named 'Hats' drawer on Sunday... perusing our collection of Old Navy infant baseball caps and hand knit winter hats when I came upon two things that stopped me in my tracks.

The ducky Pez dispenser is the most appropriate, widely recognizable Easter item I could use to demonstrate the size of these matching baby caps.

These are the hats that Will and Luke wore together during their first Easter, back in 2007 when they were still in the UNC NICU.  They wore matching green outfits and these hats when we re-introduced them to each other, after being separated at birth and put in their own cribs... because they were too critical of patients to be in the crib together.

When you're pregnant with twins, all you can imagine is them growing up together.  The tightest of relationships.  Never apart.  But for us, because Will and Luke arrived 11 weeks early, those ideas of togetherness weren't possible.  We spent the first 4 weeks of their lives frightened and confused... and asking ourselves so many times: why is this happening?

Easter was on April 8 that year, 4 weeks to the day from our babies being born. Will and Luke had their first shunts placed on April 4. Within 4 days of their surgery, Will was completely off of oxygen and they were both stable. On Easter Sunday, we were allowed to dress them, and have them lay together for the first time since before they were born. It didn't matter that they slept the whole time, or that when the magic moment was over, they went back to their own cribs. What mattered is that at that moment, there was no longer a need to ask why. They were together, as we had always dreamed they would be.  Hello brother!

For some people, it is a smell or a song that takes them back to a moment in time. For me, it is small items and photographs. I suppose that is why I scrapbook. These feelings and moments are so real and so important to remember.   Finding these hats was a tangible reminder of how small these guys were... how those caps covered up huge post-surgical scars of their heads... and how on Easter Sunday 5 years ago, we finally found a moment of peace.

With the time that has passed, the fear of whether Will and Luke would survive has disappeared.  The fear that Luke would need a repeat heart surgery is gone.  The fear that Will will never learn to swallow and chew has been negated.  That fear of the unknown... that all encompassing time when we didn't know which way was up and questioned everything about the path that had been chosen for us and our little boys... is gone.

What we have now is the happy memories of the day they were finally reunited.  The day they wore green hats the size of baseballs and slept to the soothing sounds of NICU alarms and feeding pumps.  The memory of the day that still stops me in my tracks.

Sunday, March 25, 2012

An Easter state of mind

Seems like Easter preparations have gone the way of Christmas!  It used to be that you did your one (and only!) Easter egg hunt on Easter Sunday when you got home from church.  Now there are Easter egg hunts advertised weeks in advance, on each of the next couple of Saturdays leading up to Easter in early April.  I suppose this is the way it is with everything now, but it just struck me as particularly funny today.

We were lucky enough to be invited to an Easter egg hunt at the home of good friends of ours from the Binghamton, NY area.  They have two young sons as well, so we enjoy the chaos of each other's presence!

The weather was not particularly cooperative this past Saturday (in fact, our first Miracle League game was cancelled because of the rain).  But just as we were preparing for an inside Easter egg hunt, the rain and thunder stopped, and out came the sunshine.  We rushed to hide eggs for the kids, and out the came, armed with Easter baskets and eagle eyes.

Growing up, I remember Easter egg hunts taking about 20 minutes to complete... and this was when I was much older than my boys are now, and my parents used to hide them in such sneaky places as inside the grill (that hadn't been used all winter) and under large rhododendron plants (where they knew good and well that a huge black snake lived).

On Saturday, I don't think we were out in the yard for 5 before all the eggs were found, and kids were cracking them open to see if there was any candy inside.

Fun nonetheless!  And good practice for the next couple of Easter egg hunts we're going to... with our's at home being the last, on Easter Sunday, right after church.

Wednesday, March 21, 2012

When Will is in charge of bedtime

Since we increased Will's night time dosage of baclofen (to decrease his limb movement), he's been sleeping a lot better.  I can tell in his attitude, the diminishing bags under Luke's eyes, and my own happier mood that we are all at a much better place and thankful for the night time restful peace it has allowed us.

Bedtime is still 8pm for all the little Slaviks.  We take baths, read books, and tuck everyone in as we always have.  Matt and Luke fall asleep within minutes, as they always have.  Will, on the other hand, now thinks bed time is the time to party.

I don't know if its because he's feeling good or if he's trying to tell us that he needs less sleep at night... but regardless of the reason, Will doesn't give it up until about 9pm now. 

That's an hour of hearing him laugh and make fun noises.  That's an hour of being sure he isn't seizing.  That's an hour of going in and repositioning him so he doesn't roll off the bed in his excitement.  That's an hour of encouraging him to go to sleep.  That's an hour of him smiling as big as be possibly can when you tell him its time to go to sleep.

That smile... tells me that he knows what he's supposed to be doing (sleeping) and indicating that he is aware and consciously telling us that he refuses.  Take that, Mom and Dad.

His new game in the darkness of supposed bedtime is to grab around for the tube which connects his g-tube to the feeding pump.  This is a long rubber tube that connects to the bag of Pediasure, and feeds Will slowly over the course of the night.  Will is very determined to get this tube.  He wiggles around so he can grab at it.  Then he reaches and reaches until he finally grasps it between his fingers.  And then... because he's learned how and likely because of the reaction it gets, he pulls as hard as he can.

The pump goes wild with audible alarms.  When we go in to silence it, Will has the tube wrapped around his tense fist several times.  The tube is completely taut.  And Will is wearing the largest, goofiest smile ever.

He has succeeded in making that pump alarm.  He has succeeded in getting us to come in and visit him again.  He has succeeded in proving to us that he is hilarious. And he's proven that he can master this part of his universe... because he wants to.

Tuesday, March 20, 2012

Planting an Easter tree

I've grew up with Easter trees.  I remember my Great-grandma Gert (who immigrated from Germany to the United States in the 1920s) always having a small Easter tree in her apartment.  My Grandma Mary and Mom always decorated outdoor trees with plastic Easter eggs on strings.  It never occurred to me that people outside of German and Eastern European heritage didn't decorate Easter trees!

This past Sunday, we introduced all the boys (including Nate) to the concept of decorating an Easter tree.  I don't know the history of Easter trees or why people do it... but it is a nice way to perk up an otherwise sad pre-Spring blossomed outdoor tree with bright colors and fun shapes.

It was an unseasonably warm day, slightly overcast... and we combined the Easter preparation with a birthday dinner for Oma.  Good family time!  I think the boys will look forward to doing it again (certainly more than decorating our Christmas tree)... that is if Matthew didn't break all of Oma's plastic eggs.  He cracked a couple in his hands, so excited to be hanging them from the tree that he squeezed them with all his might.  Once they were hung, he proceeded to pull on them and laugh when they fell off the tree.  Terrible twos approaching...

Sunday, March 18, 2012

Play ball!

We had Spring Training on Saturday for the boys' new baseball team, the Grasshoppers. Wow! So much fun! We weren't sure what to expect, but from the moment that we arrived, we were impressed with the field, the organization, and especially our uniforms!

All the kids on Luke and Will's team are between the ages of 5 and 8.  It was nice to meet all the kids and parents, and to check out the dugout!

Once we learned about the rules of the dugout and some of the administrivia, we were finally allowed to run around on the field and have batting practice.  Will practiced catching the ball with Joe and Stara - friends of ours for several years, who helped to start the Miracle League of the Triangle, coach one of the older kids' teams, and will serve as Will and Luke's buddies this season.  Talk about dedication and service hearts!

While Will was having fielding practice, Luke took batting practice with Nate.  Luke had never seen a t-ball stand before this day, but after Nate showed him the ropes, he loved it!  He was so happy to swing that bat, hit the ball (even if it did go backwards) and run as fast as he could to first base... then to second base, and then to third!  He really seemed to understand what was going on and got super excited to stand on the bases. I think playing is going to do wonders for his confidence. 

Then it was Will's turn for batting practice.  Joe has a lot of experience getting kids to feel comfortable at the plate, so he helped Will hold onto the bat.  Once they made contact, Joe pushed Will around the bases.  This was the happiest Will was all day!  He seemed to be a little unsure of the field, so he whined a bit during the day.  But he will get used to it... especially if someone's pushing him at a fast pace around the bases!

Matt enjoyed his time at the baseball field as well.  He played catch with one of our coaches, and cheered on the boys as they bat.  I have a t-shirt coming for him so he can be an honorary Grasshopper... the bat boy!  This shirt had to suffice until the official one comes in.  Get it, bat boy?  Ha, I kill me.

If you're ever interested in coming to a game, let me know and I will send you the schedule.  The games are at Adams Elementary School in Cary.  It's going to be a great season.  Go Hop!

Thursday, March 15, 2012


Now that Will and Luke are 5 years old, they are eligible to play in the Miracle League.  This is a baseball league for children with varying abilities.  The only real requirement is that the child have an IEP (individual education plan).  We have friends - Stara and Joe - who helped to start the league in the Triangle area several years ago, and have been reminding us for several years that THIS is the year the boys can finally play!

We always wanted Will to play in the Miracle League, because he doesn't get many opportunities to be front and center.  They play on a baseball field specially made for them.  It is totally flat, rubberized turf with bases painted onto it.  No bumps, no bases sticking up... perfect for wheelchairs and gait trainers!  There are sponsors, ADA dugouts, fan bleachers, and a PA announcer.  Each child gets to bat in each inning, no one gets out, and the game ends in a tie.  They play every Saturday for the next couple of weeks. 

A couple of weeks ago, I told Luke that Will was going to play baseball.  He looked a little perplexed.  "Mommy, I want to play baseball with Will."  Through teary eyes and a wavering smile, I told Luke that of course he could play baseball with Will (he still has an IEP, after all)!  I quickly filled out their registration forms and we were on our way.  I found out recently that they're going to be joining the Grasshoppers team.  Stara and Joe are going to be Will and Luke's buddies - basically every child is assigned a buddy to play with them - so the parents can enjoy watching their child play from the stands.

This Saturday is our first Miracle League gathering - Spring Training!  We go to the field, meet Will and Luke's coaches and team mates.  Then they get to pick up their uniforms.  I think this is probably the thing that Luke is going to be the most excited about.  He loves - LOVES - the NY Giants, NY Yankees and Binghamton Senators team gear that he already has. 

We're really looking forward to this opportunity for Will and Luke to play baseball together.  We aren't sure how many years Luke is going to have an IEP, so it was important to seize this opportunity now!  It will be so fun for Nate and me to sit in the stands and watch our boys have fun in a wonderful, accepting, loving environment.  I'm thinking of getting Matt a "Grasshopper Bat Boy" team shirt so that he can put on his "uniform" before we head over to the field, just like his big brothers!

So the only thing we're missing is a "walk up" song for each of the boys.  This is a song that the announcer plays when each child comes up to the plate.  I asked Luke tonight what his favorite song was.  "Mommy, I like 'The Days of the Week' and 'The Weather Song.'"  Hmmm... so if you have any ideas for the perfect walk up song for each of the boys, feel free to post your suggestions!

Wednesday, March 14, 2012

And just like that...

Johns Hopkins called.  We have a date.  In less than a month, Will will be admitted into their epilepsy monitoring unit (EMU) for at least one week.  Longer if he doesn't have a seizure during that first week.  Because they take Will off of his seizure medication while we are there, they make you stay until you have a seizure. 

Nate and I have so much to work out.  Because this is simply monitoring and there will be no surgery, we have decided that one of us will go up at a time.  But for how many days?  How do we transition?  Where do Luke and Matt go?  What should we do to pass the time... just waiting for a seizure to occur?   We've been instructed to bring DVDs, games, toys, everything under the sun.  The plan is to pool some resources and finally get Will an iPad before we head to Hopkins.  This way he'll be able to stay active in his daily classroom activities through FaceTime.

We've been letting Will's hair grow out recently, but because he could be hooked up to EEG leads for weeks on end and not able to shower, we're planning to buzz cut his head right before we leave in an effort to decrease the grossness that could develop between his hair and EEG leads.  We'll be able to give him sponge baths at the sink, thankfully, so that will take care of the remainder of stinky Will.

Matt's 2nd birthday occurs while we will be inpatient at the EMU.  We've now planned to have it a little early, so the family can be together before our longest period of unrest yet.  How odd for us to be separated for this long.  At any given time there will be two little Slaviks in North Carolina, one little Slavik in Maryland, one big Slavik in Maryland, and one last big Slavik somewhere in between... holding the home life together as best as possible.

While this is what we expected and were pulling for, the reality sets in when you realize all the little details of life that have to be worked out.  I am grateful that we have a few weeks to settle it out.  I have to start working on the pre-approval through insurance. I am hoping that isn't too painful... but we shall see.

I need to ask for some assistance from you all.  One of the things they told us is that Will will only be able to wear button-down shirts... nothing will be able to go over his head.  We don't have any 5T button-down shirts, and the truth is, after this hospitalization, we won't need them again.  If I can avoid buying them, I'd like to.  So do you, lovely reader, have any boys 5T button down shirts to loan?  Stuffed somewhere in a box in the attic?  If so, could you lend them to the cause?  I promise to return them, laundered and folded, once our EEG study at the EMU is over!

And just in case we needed a reminder of why we're going through all of this upheaval and soul-searching, Will had a seizure last night.  We really didn't need that reminder.  We knew he was "due" for a seizure soon based on his history.  Unfortunately he also rolled out of bed and smacked his head on the bookshelf.  Insult to injury.  He's got a cut on his forehead and a lump above his shunt (of course that is right where he hit his head), and spent most of the day exhausted from the seizure the night before.

So while I am grateful for the time to work out the life details of a potentially long inpatient stay with Will, I am also anxious to get him there... to finally figure out what is going out and what can be done to stop this.  To finally give him the chances to develop that these seizures have been stealing from him.

Tuesday, March 13, 2012

Losing a wheel

Perhaps we waited longer than most parents to exchange Luke's tricycle for a bicycle.  In our defense, we're pretty protective of Luke's head and given his balance challenges, we thought waiting until he turned 5 was the best decision for him. 

It also helps that Matt has now claimed ownership of the tricycle.  It was time for us Luke to move on.  To lose a wheel.  To gain some confidence and independence.  And a great bike helmet.

Oma babysat for Will and Matt on Sunday so we could take Luke on a special trip to pick out a new bike and helmet, without the distractions of two little brothers.  He seemed to appreciate the attention and was genuinely interested in finding a two wheeler.

The first place we tried had a couple of appropriately sized bikes.  Luke tried both of them and did alright, but certainly wasn't in love with the wobbly feeling he got bouncing between training wheels.  He spotted a tricycle, hopped on, peddled away, and then told us "this one is just right."

Eventually we got him back to bicycle hunting, and went on to the next store.  We immediately spotted a cool black and orange 16" bike.  Luke seemed to like it better than the others we had seen.  He peddled it around the store a couple of times.  He was happy and confident.  He told us he liked it!  Success!

Then we went to look for a new helmet.  Nate spotted this one.  Good photo op, but Luke wasn't the biggest fan of the '8' on the hat.  He just turned 5 in case you forgot.

Eventually Luke settled on a similar helmet with black and white racing checks.  I was so happy to see this logo on the back of the helmet!  It echoes my mentality! 

Luke got to try out his new bike and helmet as soon as we got home.  It took a little bit of convincing by Daddy, but Luke eventually got on the bike and rode around the cul-de-sac.  It took a little while for him to get used to the brakes.  He seemed to smile after a while.

Unfortunately just as he got a little bit of confidence in spinning those new wheels, Luke hit the joint between our street and our driveway.  He was pitched off the bike and landed with a thud on his shoulder.  He also scratched up his brand new helmet.  But that's what its there for, right?  We brushed him off, righted the bike, and off he went again. 

Luke shared his new helmet with Will.  Daddy took Will for a racing run around the cul-de-sac.  He loved it, and didn't mind wearing the helmet.

Luke would not share his helmet and bicycle with Matthew.  That did not stop Matthew from trying to get onto Luke's bike.  Thankfully he's too short to get his leg over the seat.  It is only a matter of time.  But for now... in a word... jealous. 

Monday, March 12, 2012

Road Rally

The goal is always inclusion.  As Will and Luke's fifth birthday approached, I was seriously lacking ideas and inspiration for how to make this birthday special and inclusive.  One Saturday morning precariously close to their birthday, as I sipped coffee through barely-open eyes and the boys watched Mickey Mouse Clubhouse, it suddenly came to me.

A road rally. 

Invite kids of all abilities to our house, and encourage them to bring the ride of their choice.  Put everyone on wheels, to be just like Will.  Decorate those rides and cruise around the neighborhood.  Everyone likes to show off their ride... just ask the guys in the Porsche club at Brier Creek who meet to admire the same cars each and every Saturday morning.

We were blessed with a gorgeous day and many good friends and family to share in our joy and fun.  And the rest is best told through photos...