Sunday, September 30, 2012

I'm Thomas. I'm pulling a train full of Slaviks.

We love the North Carolina Transportation Museum!  You probably know that... but I'll say it again!  We all love it there.  Last weekend, they hosted a Day Out with Thomas.  Thomas and Friends is a popular British television show on PBS in the US - about Thomas (a train engine) and his friends at Tidmouth Sheds on the Island of Sodor.  Luke, Will and Matt all enjoy the show.

I was pretty psyched when I found out that there is a true to life sized Thomas the Train that travels around the United States for Days Out.  I has no idea how popular it would be though...



Nate's mom (Grammy) came down from New York to spend the special Thomas weekend with us.  We arrived at the museum a little later than we'd anticipated, and were shocked that our typically sleepy museum had completely full parking lots and a traffic cop!  There were people everywhere.  Through all the hustle and bustle and excitement, we managed to get our tickets and into the train line on time.



Each train museum that hosts a Day Out with Thomas uses their own passenger cars for the ride - we are again grateful that the NC Transportation Museum has a railroad car equipped with a handicap lift and special wheelchair tie downs inside.


We settled into our seats, tied Will's wheelchair down, and enjoyed some Thomas music as the rest of the train passengers got onto the train.  I can't imagine how many people took train rides on that day we went.  There were sold out rides leaving every 45 minutes throughout the day, and there had to be 6 or 7 passenger cars on the train.  All the boys were excited so they didn't mind the wait... even Matthew, whose patience that day was compromised on account of his right ear having been some spider's snack overnight.  It was red and swollen, but after a dose of Benadryl, he was doing alright.


Finally, the train left the station.  It didn't matter to Luke, Will and Matt that they'd been on basically the same train ride less than 6 weeks ago.  This was a Thomas train ride - and one to share with Grammy! 


After the train ride ended, we walked around the grounds to see some of the other Thomas related stuff they had.  Of course people were taking pictures with Thomas whenever he was stopped to allow passengers to board.  But of course, there was a long line for that and a professional photographer that you had to buy your pictures from.  So there are no pictures of the boys with Thomas because I didn't feel like waiting in line or paying for a bad photo :)

But they didn't seem to mind not having that picture.  They were too interested in playing with the Spencer fire engine, figuring out which vendor booth we should get drinks from, convincing me to buy train souvenirs from the humongous Thomas souvenir tent, and testing out a train table.  It was a great time!

Will's favorite part of the day was taking a quiet moment with Grammy, away from the high energy, loud events in the roundhouse.


Luke honed in his cornhole skills - playing a Thomas bean bag game outside of the souvenir tent.


Matt recovered well from his spider bite... just in time to scare the crap out of all the parents of little kids, standing around a Thomas themed bouncy house.  This is supposed to be a slide that he is going down.  I don't think that was thrilling enough for him.  That's a good three feet of air between his rear end and the slide.


I'm sure we'll be back to see Thomas again next year!!

Tuesday, September 25, 2012

Boy on Fire

video

Our neurologists often told us that once a child's seizures are controlled, their development suddenly starts back up again.  When a brain is constantly under fire, it tries to protect itself.  It doesn't grow or make new connections.  It knows to keep things status quo to avoid any damage.

We've tried a number of epilepsy drug combinations.  We've had Will evaluated for seizure surgeries and diets.  The drugs weren't working and his seizures were getting worse.  While we contemplated next steps, we started Will on a medicine with some pretty sleepy side effects - phenobarbital.  A lot of people don't tolerate it because it makes them tired and lethargic all the time and they can't function.  Will is usually a bit crabby, so we were concerned that the phenobarb would make him feel worse.  Thankfully he is tolerating it well.  We've even been able to start weaning him off of one of those other seizure drugs that don't seem to have an effect his seizures.

I've held off posting anything until now because I don't want to jinx anything... but I just can't keep it in anymore.  Will's last seizure was his second day on phenobarbital - before it had time to take effect.  And that was more than a month ago.  He has been sleeping well and through the night (a good side effect of taking a drug that makes you sleepy right before bed time!).  And aside from a brief bout with a sinus infection, he has been doing amazingly well.  Even through that illness, he remained seizure free.

Its ok to cheer outloud if you want to.  I sure am.

So since Will's seizures seem to finally be under some type of control, his development has started back up again.  Baby steps.  First he started tolerating walking with assistance at physical therapy.  Then he started chatting and interacting... he started saying "hi" when you say it to him first!  And finally, the kicker... all of a sudden in the past 2 weeks, he LIKES his gait trainer.

A gait trainer is a walking aid.  It holds Will up vertically, has a little bicycle-type seat for him to sit on, and has big wheels to help him motor around.  We have had it for more than a year.  Up to this moment, Will has hated it.  HATED.  And I know that's a strong word.

But our incredible nursing assistant Nicole saw Will's development, and took it upon herself to take the gait trainer out of its dusty closet confines and gave it another whirl with Will.  They started small.  A few steps in the house.  She cheered him on and he didn't scream, so they tried more.  With a little bit of assistance, Will and Nicole started taking walks around the house together.  And just today, they took the gait trainer outside, and Will walked UP the hill in the sunshine, smiling as he took his first ever walk outside.

Its ok to cheer outloud again.  And then get a tissue and wipe your eyes... because I bet you're just as excited for and proud of this kid as we are.

If you get the blog update via email, please visit our web address at www.ncslaviks.blogspot.com to view a video that I took of Will and Nicole walking down a long hallway in our house.  What an amazing kid.  Who knows where he's going to go now that his brain has a reprieve from these seizures... I have a feeling its going to amaze us all even more.

Monday, September 24, 2012

Crush it

Playing in the Miracle League is a great thrill for Luke.  He loves his uniform.  He loves seeing his friend JT every week.  He loves his coaches.  He loves his name sticker.  He loves to pick a bat.  He loves to get water from the cooler in the dugout.  He loves his buddy, Aunt Stara.  He loves to check out the weekly batting order when we arrive at the field.  He loves it when he bats first.  He loves it when he plays pitcher.  Thankfully his coaches know that he loves all these things, and more often than not, they have Luke playing pitcher and batting first.  He even loves to stand in line and listen to the announcer call out the batting order, step forward, raise his hat above his head, and wave at the crowd when they call his name.

Luke is very astute when playing the field.  Stara has done a great job of showing how to field the ball when the batter hits it off of the tee.  Once Luke has a handle on the ground ball, he knows to throw it to first.  He gets it.

But nothing is quite as thrilling to Luke as batting.  He loves to hit the ball.  He loves batting practice before the game starts.  He loves walking up to the plate when they call his name and play his song (Survivor's Eye of the Tiger).  Twice during each game, he walks up to the tee, chokes up on the bat, and takes aim at the ball.

Lucky for him, Luke got to bat three times this past Saturday.  He was SO excited to be first up to bat (the Grasshoppers were the visiting team, so he was the first batter of the whole game - EVEN BETTER).  When the announcer called his name, he grabbed a bat, marched up to the tee, took aim, and swung for the fences.  Too bad the home team really hadn't had a chance to take the field yet, and even Aunt Stara wasn't expecting Luke to act that quickly.



If you look closely at her face, you can even imagine her in the midst of saying "WAIT!" but its too late.  Luke's already making contact.

Even though Luke took off for first (and then second) base within seconds of this shot, the umpire made him come back home and hit again.  I don't think he actually minded.  By the time he bat again, there were fielders and buddies waiting.



Stara looks much calmer in this photo.

After the second inning stretch, Luke excitedly grabbed and bat and headed for home plate to bat for his third time of the game. The umpire and Stara had learned their lesson, and kept Luke close and unswinging until the Lil' Indians had safely taken the field.

When Luke was given the OK, he stepped up to the tee, choked up on the bat, and swung with all his might.  He's got spunk.  And a spark. You can see it in his face that all he wants to do is crush that ball. His bat made contact with the ball, Luke dropped his bat carefully next to the tee, and off he took running, thrilled as he could possibly be.

Sunday, September 23, 2012

Another week, another game, another try

After the drama of last week's Miracle League game, this week was supposed to be the be all or end all game for Will.  The one where I put foam ear plugs into his ears and we figured out once and for all if he could handle being there.

I thought I had a mammoth pack of foam ear plugs.  But after tearing up the bathroom closets, I still couldn't find any.  And of course, it was time to leave for the game.  So inadvertently we gave Will another shot at a baseball game, sans ear plugs.

Grammy was visiting us from New York for the weekend.  During the drive to the park, we were talking about what to do if Will started screaming.  For most of last season and the first game of this season, he has started getting upset when we rolled into the parking lot at the field.

Strangely, he didn't do that on Saturday.  He was laughing as Uncle Joe pushed him around for batting practice.  The sound of the announcer and the clapping during the lineups didn't seem to phase him.  It was odd.  He was having fun trying to take the hat off of his head.  He was even tolerant enough not to cry when I snapped a picture of he and Luke with their buddies, Aunt Stara and Uncle Joe.  The boys have been playing Miracle League since March, and I've never been able to get such a shot before now. He even went up to bat, amongst the chaos and the announcer and the cheering crowd... with nothing but a little tension in his arms.







After the second inning stretch (there are only 2 full innings in Miracle League games at this age, and of course you have to sing 'Take Me Out to the Ballgame." Who cares what inning it is!), Will's tolerance had waned. The noise was starting to get to him. Thankfully Grammy is good at coming up with new verses of 'The Wheels on the Bus' and kept Will smiling until it was his turn to go up to bat again. I can't tell if Grammy came up with the verse 'The boys on the bus say "Look at my muscles" though, since Matt's been singing that one all day.



It was Will's best game ever. We have no idea why! He was ready to go by the end, but he hadn't screamed for the entire game. Baby steps! And I'm still going to bring those foam ear plugs to the next game. Just in case.

Wednesday, September 19, 2012

Back to the ballpark

The fall Miracle League season is upon us. We had great weather and a great turnout for our first game. Luke and Will rejoined their friends and coaches on the Grasshoppers.

Luke was in his glory at the ballpark. His usual buddy (Aunt Stara) was away this week so he had to make due with a substitute buddy. Lucky for Luke, the volunteer group this week were college students from NC State, and he picked himself a cute 20 year old girl buddy. He's a smart kid. He had a great time at bat, and ran himself two in-the-park home runs for his two at-bats. He also played pitcher again this week, and really seems to understand that his job is to field ground balls and throw them to first base. He doesn't really matter to him that there usually isn't a first baseperson and there are actually no outs in Miracle League.







We started playing Miracle League to have a place where Will could have fun and enjoy baseball... having Luke play too was a bonus. Unfortunately, Will is making it pretty obvious week in and week out that he doesn't enjoy playing baseball. He cries when we get to the ballpark and isn't happy for the duration of our time there. We've tried different buddies (Uncle Joe and Oma have given it a valiant effort), we've tried his wheelchair and his gait trainer and him being held up on the field by Oma. We've given thought to headphones but we know he'd be mad about them and try to knock them off his head. I'm debating trying foam ear plugs this coming weekend, since he won't be able to knock those off. What really seems to set Will off is the sound of the announcer and the sharp sound of an audience clapping. And you can't really stop the cheers and clapping when you're surrounded by a wonderful group of accepting, postive, and supportive Miracle League friends and family.

If the foam ear plugs don't work, I am not sure exactly what we try next. Do we keep trying? We spent the spring season with a screaming Will. I thought he would warm up to the ballpark by now, but at some point I start to ask myself if we're torturing him with baseball. Is it worth it? It is against my nature to give up or quit... but at some point, is it ok to throw in the towel... knowing you gave it your best try? Why do I feel so much guilt about even having that thought?!

Tuesday, September 18, 2012

doorknobs.com



One of Nate's earliest memories is of playing a game of Nerf basketball with his dad when he was around the age of 3, and losing.  He was so angry that he lost that he stormed into his room and locked the door behind him.  Despite his parents pleading for hours for him to open it, he refused.  And in the end, they called 911 for help.  The responding firefighters removed Nate's door to free him into his parents' open/angry/relieved arms... and not long thereafter, the doorknob was removed to prevent him from locking them out again.  And he never did... by the time they moved out of the house when Nate was in fifth grade, the doorknob was still missing.

Our house is starting to look at lot like the Slavik house circa 1980.

Luke was in a great mood all afternoon and evening.  He had a good day at school.  He ate well at dinner.  He talked to Aunt Kylie on the phone.  Shortly after the phone call ended, Luke put away Dr. Jekyll and brought out his Mr. Hyde.  Screaming tantrum... over what, I cannot even remember.  Several times he ran into his room and slammed the door.  On the last occasion, Luke slammed the door in Nate's face and locked it.

Nate's 32 year old memory kicked in, and he acted quickly and knowingly. Only he didn't need to call 911. He quietly grabbed his drill, and unscrewed all of the doorknob screws.  Out came the doorknob.  No more slamming.  No more locking anyone out.  Effective.  But you would have thought the world had ended.

Luke went from screaming and tantruming to crying a lamenting cry for his missing doorknob.  After pleading repeatedly to have his doorknob returned, Luke's mindset changed.  If Daddy wasn't going to help him, he was going to have to find a new doorknob for himself.

Through sniffles and with a tone of despair, Luke announced:

"Oh no Daddy!  I have to get another doorknob to put back on my door.  I am going to have to go to doorknobs.com!"

Then he tried to get out of bed and get to the computer so he could go to doorknobs.com.  I was in Matt's room, getting him ready for bed and laughing outloud.  I could hear Nate in the boys' bathroom, stifling giggles.

Where does he come up with this stuff?  And how, as a parent, do you avoid laughing out loud at some of the stuff that comes out of your kid's mouth!?!  I know that if we were laughing at Luke's comment in front of him, he would have gotten really angry with us.  I am just thankful that we were not in the same room as him when he made the doorknobs.com comment.  Otherwise I would have been running for the door and covering my face to hide my laughing.

Monday, September 17, 2012

When bad photos happen to cute kids

I get it.  You went to school to become a photographer.  When you graduated, you weren't sure what to actually do with your photography degree, so you took a job with a local photography company.  They tell you you're going to take school pictures for local elementary schools.  Its your first job out of school.  You're all about snapping photos of cute, adorable kindergarteners.  What could be better?

The first couple of days are okay.  The kids weren't nearly as cute as you thought they'd be, the teachers are stressed out, and what's with 5 year olds who won't stay still, don't hold their head like you tell them to, and are more interested in when recess is than helping you shoot your next masterpiece?  Oh and by the way, you're shooting a single shot of hundreds of kids each day and after a while, they all start to look the same: short and uncomfortable in the nice clothes their moms sent them in that day... for their school picture.  The one that will be forever immortalized in yearbooks and mantle pictures frames everywhere.

Every day you're at a different school.  You're getting tired of this.  You start to play mind games with the little kids... telling them to say cheese, seeing them smile excitedly, waiting longer than you should to press the shutter button, and then finally shooting their picture when their face has changed from smile to confusion becase you didn't take their picture when you thought they would.  You have a lot of private laughs to yourself about this as you're loading up the company van after another long day of bad photography.

After a while, you just don't care anymore.  Kid has a PB&J smile after lunch?  Take the picture.  Next!  Kid is crying because they tripped on their way to sit on your photo stool?  Say cheese, sister!  Next!  Kid with special needs - no I'm not working with you longer to get a better shot.  You get what you get.  Next! 

Apparently AFTER you hit this rock bottom spot, you landed at my kids' schools to take their kindergarten school pictures.  You know, I take a lot of photos of my kids.  They aren't always the best shot, sometimes eyes are closed or the picture is out of focus... but I've never taken photos this bad.  And I'm not even a professional.



Sunday, September 16, 2012

At the carwash

I've never been one to care about washing my car. Living in New York in the winter time taught me that car washing is a futile, losing battle. So when we moved to North Carolina and my car wasn't perpetually white with road salt, I call it pretty clean.

That is, of course, until this past week when I realized that my van hadn't been washed since before we drove to Boston in July. I know the guys out there all let out a collective groan of disgust just now, reading that its been more than 2 months since the exterior of our van saw a sudsy sponge. What do you want me to do!?

Well thankfully, I have an observant son ('Mommy, your van is VERY dirty') and a husband who likes to wash vehicles. Between the two of them, they devised a plan to wash my van this weekend, before someone wrote "WASH ME" in the grime on the back window.

Out came the buckets, out came the sponges, out came the soap... and then out came the power washer. Nate, Luke and Matt scrubbed and sprayed and successfully the cleaned the front driver side corner of the van while Will and I stayed dry in the garage.









The boys started losing interest.  Our neighbor came over and asked them to play.  They were gone.  Will needed some food, so he and I had to go inside.  Poor Nate was left to wash the three-quarters of the van by himself.  He did a great job!  For my one car wash of the year :) and of course it rained all day today.  Car washing is a losing battle.

Wednesday, September 12, 2012

Douthat

It shouldn't come as a surprise to any of our regular followers that I am a big fan of the Virginia State Parks. Yes, yes... we're the NC Slaviks. And while the NC State Parks are very lovely, they don't have much in the way of cabins. We aren't able to do tent camping because of our need for Will's feeding pump power, so to get into the outdoors, we like to stay in cabins.

In the spring and fall, I plan several weekends to different Virginia State Parks. There are about 35 of them, and so far, we've been to 4. We visited our 5th park this past weekend - Douthat State Park in Millboro. Very close to West Virginia, with a lovely view of the Blue Ridge.

Douthat is the original VA State Park, and like Hungry Mother, built by the Civil Conservation Corps in the mid-1930s. Lots of trails, a restaurant, 38 cabins, a lake, boats... I've been looking forward to going since we drove by on our way back from Snowshoe Mountain in January!

We arrived on Friday, settled in and enjoyed a campfire. Saturday we woke up, ate a nice breakfast and hit the trails. There was an "extreme" trail running race in the park that day (one of the races was 40 miles long and had an elevation change of more than 2000 feet in the first 4 miles), so we dodged runners on one of our passes around the lake. After lunch, the rains came so we spent the afternoon reading books, playing with toys and sitting in the rocking chairs under the covered porch. So relaxing... and amazingly, no one once asked for a TV. I was pretty happy about that. We enjoyed another campfire that evening, and of course, made s'mores. Here are some pics from our Saturday.

I think Otis might have been the most tired Slavik by the end of the day. The cabins are pet friendly, and he is such a happy active boy when we go to one of the parks!
















Sunday, September 9, 2012

Run Away

Sometimes you need to run away. I'm not talking about running out of your bedroom or across the yard. I'm talking about the times when you run and you don't look back. When you need a change of scenery to reset and find your balance.

To say that Luke is having a tough transition to kindergarten is a bit of an understatement. I've written earlier posts about Luke and his unhappy face and his stomach telling him to do bad things. And while sometimes we can work through a situation by laughing, we can't do it all the time and still address any issues that pop up.

We wrote Luke's IEP last year with a tough transition in mind. We know him. We know he doesn't like change. We wrote in the IEP that he was to be pulled out of his class for both continued speech services and for some additional time where his special education teacher takes him out of class and they work on paying attention or social skills or any other random area where we feel Luke might need some extra attention.

He was doing so well during the first week that his teachers were talking about pushing his services into class (the next step after removing him from class for services - his speech and special ed teachers would work with him in his classroom in and amongst his peers). Nate and I just weren't comfortable with this yet, and although we didn't feel as though the teachers agreed with our decision, we all agreed to keep Luke's IEP intact as it is, to transition him through these first 9 weeks of kindergarten with our plan from last year.

Since then, Luke has come home with an unhappy face on his daily report about once per week. Additionally, on average of once per week, his after school program reports that he isn't cooperative. When we try to ask him what is going on, he tells us that his brain is telling him to do these things, or that his friends told him that his picture didn't look like a house and that made him sad, or that he doesn't like gym class. The bad reports from school or the after-school program make him so sad. He WANTS to be good.

We've tried lots of hugs, talking to him, special time with parents, moving up bed time, more rules, fewer rules... so far, no changes.

I went back to his special education team last week, and asked them to rethink how they were approaching this whole good report/bad report thing. His special education teacher worked with his regular ed teachers on breaking up his day into smaller chunks, so that he would receive more happy/unhappy faces in a day - they would be more task dependent and not so daunting for Luke. Now he basically gets an average of several smaller daily reports, rather than one single report.

Luke is a preemie. As easy as it is to think he's doing great because he doesn't have as many challenges as Will, well that isn't really fair to Luke. While he can walk and talk and feed himself, he still has a challenge with coordination and attention and over reacting to situations. These are all common of preemie kids as they grow, and things we will likely continue to attend to.

So this weekend, we got away. For Luke. To change his scenery and allow him to regroup and reset. Maybe that sounds silly for a 5 year old. But I honestly think he needed it. All he could talk about when he woke up on Friday was that when he got home from school, we were going away to a cabin.

We got in the car and drove 4 hours, leaving school and after school and unhappy face reports behind us. We arrived at Douthat State Park in Millboro Virginia and checked into our TV-less, computer-less cabin and pressed the reset button.

On Saturday morning we woke up and we hiked. Will in a backpack, Luke and Matt on foot. Uphill, downhill, nearly 3 miles of trails. At one point, as I tended to Matt's shoe and Nate and Will peered across the lake, Luke decided to run.







He looked free. He looked coordinated. He was measured and balanced in his steps, running downhill amongst leaves and tree roots. He was happy. And so proud!

A year ago, I don't think Luke could have run as well as he did on Saturday. He would have been nervous or turned his left foot in or tripped himself. But this boy, he's gaining confidence. He doesn't want to feel different or held back by anything, and I love that about him. When friends ask him about his feet braces, he answers confidently that "these help me run but I won't need them forever." There's no shame in his voice.

He was ready to go to bed tonight, talking about going back to school tomorrow and going to a doctor's appointment. The change of scenery maye have just done the trick. As we continue to support him through this transition to kindergarten, I know he'll find his stride. These days of unhappy face reports will go away. His ability to attend to his classroom work will improve. Its going to take some time. Sometimes running away can help you see the forest through the trees.

Thursday, September 6, 2012

Transportation Museum


Aha! Another summer goal acheived and conquered! We made it to the North Carolina Transportation Museum! For years I have been hearing about this museum, but we haven't made it there before now. An entire train hub from the steam engine era, turned into a museum.

The trip is a bit long for us (2+ hours), as the museum is located in Spencer, down in Rowan County. Not really near any of the big NC cities, so I was curious. As it turns out, back in the day of the steam engine, steam engines had to be serviced every 500 miles. Washington DC and Atlanta GA were large railway hubs at the time, and an enterprising young Congressman realized that a steam engine maintenance yard needed to be constructed and his district in Rowan County was exactly halfway between DC and Atlanta. Smart guy. So the town of Spencer was created and a railroad mecca buit there... complete with the largest still-operational roundhouse in the country!

Despite the weather (rain rain rain) we had a great time at the museum, checking out historic trains, cars, walking through the roundhouse and other restored buildings on site. All the boys loved it, loved peeking in windows of Charles Schwab's train car, putting mail into boxes in the US Postal Service car from the early 1900s, and pretending to need a medic in the Army Mobile Hospital car. We even got to see some train restoration projects. I never realized how intricate train cars were... and how different train engines through the years have been built and ran. So neat.




The true highlight of the day, though, was the train ride that we took at the end of the day. I have got to commend the NC Transportation Museum - they have really removed all the stops and created a fully accessible place. There is a railcar fit up with a wheelchair lift, just like Will's school bus! And once he was on the train, the railcar interior has several wheelchair tie-down spots with nearby seating for all families to ride in style. I can't explain how awesome that was. Will was in his glory.

So we rode the train, enjoyed the view, got our tickets taken by the conductor, and learned so much. Awesome. Can't wait to go back later this month for our Day with Thomas!!