Tuesday, February 28, 2012

Head meet bus. Never good.

Back in the second semester of my freshman year of college (1998!), I went skiing with about 20 friends of mine in Bristol, New York.  I was not the best skiier at the time, so me and my friend Ann went off on our own to take our time on the slopes, while our more accomplished skiier boyfriends taught our other friends how to ski.

In the early afternoon, Ann and I passed my boyfriend (not Nate!) with his group of students.  We waved and went on.  Suddenly I realized that Ann wasn't next to me anymore.  She had stopped higher up on the mountain, because she heard my boyfriend yell for us to wait up.  I hadn't heard him.  I pulled off to the side of the mountain to wait for them. 

The conditions had gotten very icy.  My boyfriend had intended to ski quickly down the hill to catch up, and then spray me with a lot of snow as he stopped by my side.  Like 20-year old showboat skiiers will do.  Unfortunately he hit ice instead of fluffy snow.  I didn't get a faceful of snow. 

He ran into me going about 30 miles an hour.  I was at a dead stop.  Totally unprepared.  I flew over the top of him and landed in a heap on the ground.

My only memory of that exact moment is the taste of metal in my mouth.

The doctors believe that I lost consciousness for a few moments.  Somehow I skiied my way slowly down the mountain, and found the ski patrol.  My boyfriend told them what happened (I am sure he felt so guilty).  They didn't waste any time putting a brace around my neck, strapping me to a backboard, and transporting me to the local hospital.  I proceeded to have a conversation with the EMT about my history as a lifeguard and my experience with these types of backboards.  I think we had the same conversation 5 times on our way to the hospital.  Each time it was the same conversation, and each time it was new to me.

At the hospital, I failed several neurologic tests.  I vaguely remember an MRI or CT scan being done, and hearing voices while I lay still.  The imaging showed no brain bleeding... just a severe sinus infection.  They wouldn't let poor Ann back to see me because I was only allowed to have one "guest" and my boyfriend wouldn't leave my side.

I was kept for observation for several hours.  I kept asking my boyfriend what had happened.  He would (guiltily) repeat the story.  Each time I would cry at exactly the same moment.  I'd dry my tears, calm myself, and then 5 minutes later, would ask him what happened.  From his recollection of the event, we had the same conversation 20 times over a couple of hours.  I think he likely filled his guilt quota for his life, reliving that showboat moment over and over again.

They diagnosed me with short term memory loss (my long term memory was intact) and said that my amnesia would likely go away in a couple of days.  Ultimately, I was released to Ann and my boyfriend, with explicit instructions that if I had any further neurologic symptoms, I should go back to the hospital closer to school.  It was at that moment that I tried to call my parents to tell them what happened.  I called my mom with no problem - she still had the phone number that I had at home since I was 2 years old.

Then we tried to call my dad.  My parents had divorced by this time, and I couldn't remember my dad's phone number.  I kept mixing it up with his work number, my mom's work number, my own dorm room number.  After several frustrating attempts, we finally got ahold of him.  I remember trying to tell him what happened.  I remember him asking to talk to my boyfriend.  I remember telling my dad not to be mad at my boyfriend.  It occurred to me later that I probably wasn't making any sense, and my dad wanted to talk to someone who hadn't just been concussed.

After discharge, we were all starving and stopped at McDonald's before heading back to school. I decided that my body needed nothing more than a Quarter Pounder with cheese combo and a vanilla milkshake.  I paid for my meal, they gave me my soda and my milkshake and told me that they would bring my food out to me in a few minutes.  I sat down, happier than anything with my drinks.  Ann, my boyfriend and some other friends joined me at my table, and asked me where my food was.

I couldn't remember.  I started to cry.  Where WAS my food?  At that exact moment, the girl from behind the counter came up with my sandwich and fries.  I am sure I was a sight.  She gave me the food and apologized profusely. 

Over the next couple of days, I couldn't keep anything in my head long enough to write it down.  Classes were frustrating.  I told my mom I wanted to drop out.  She called the Dean of Students, who I sat down with on a couple of occasions.  He convinced me to stay in school - that they would do anything they could to help me.  My dad offered to come up to Rochester and stay with me to help out however he could. 

Eventually, things went back to normal though my memories of the accident and the days that followed are just broken images and smells and tastes of things that happened.  That boyfriend and I broke up (and no, not because he caused me such a scary injury!)  And until today, that was the last time I had a head injury!

This morning I put Will on the bus like I typically do.  I stood next to the emergency exit in the back of the bus, and kissed him goodbye as his chair was being tied down.  But for some reason today, I stood too close to the door, stood up too fast, and hit the base of my skull on the door bar on top of the emergency exit.  WHACK!  It didn't hurt too badly at the time, but must have sounded bad because the bus aide asked me if I needed to sit down for a minute.

Over the course of the day, I got a headache.  Then it started to get worse.  Then my neck tightened up down through my back.  And then I started to get a little shaky on my feet.  My co-workers convinced me that I needed to get my head checked.  One of them kindly drove me to see my doctor.

This was nothing like 1998, but it was still a little scary.  Thankfully I passed all of my neurologic tests.  But given that this was possibly my third concussion (my first was likely when I was in the 3rd grade and had a playground accident), they didn't want to take any chances.  Off to CT I went.  Thanks Vickie for being my chauffer!

Thankfully the CT showed no evidence of brain trauma.  It did - ironically - again reveal that I have a sinus infection.  Given all of this, my doctor said that I did not have a concussion, but had hit my head badly and needed to rest.  So now I am home with a fistful of 800mg ibuprofen (this neck isn't going to feel good in the morning), alternating between a heating pad and Opa's intense ice water cold therapy system!

Hopefully I've reached my head injury quota for my 30s.

Sunday, February 26, 2012

Hungry Mother

... not to be confused with the Tough Mudder... so if you haven't had the opportunity and would like to, please donate to Will's Warriors here. Less than 10 weeks left until the big event at Mt. Snow, Vermont!

With so many unknowns surrounding our next couple of months, we decided to get away this weekend to a state park in Virginia.  Though we're residents of North Carolina, we've found that the Virginia State Parks rock!  We've been on several cabin weekends there through the past several years, and have explored several parks in the central part of the state.

This past weekend, we went to Hungry Mother State Park in Marion, VA... our first time heading into the Appalachian Mountains for a weekend away.  And our first time on our own... just us and the boys!

I don't know how I happened upon this park, but once I saw the name, it was like I HAD to go.  I'm always a hungry mother, so thought it would be appropriate to visit.  Once I read the history behind the park (here), I felt a little differently.  Even so, away we traveled. 

Even Luke was into the name of the park, asking me on more than one occasion: Mom, will I get hungry at Hungry Mother State Park?

Let's just say that things didn't go as smoothly as I would have planned in my perfect world.  We arrived shortly after the boys bed time, but couldn't get into the cabin!  It took a while to get a ranger there to let us in.  Once inside, everyone wanted to explore except Will who wanted to get to bed.  The kid was tired.

The cabin was a two bedroom, with one room having a full size bed and one having two sets of bunks.  All 3 boys shared the bunk room, so it took a while to get them all settled and quiet to a point where they didn't wake each other up. 

Around 2am, I awoke to Will coughing in the room next door.  Kind of odd, but I was happy that I was so close to be able to hear it.  I walked in, and Will was wide awake and on the verge of vomiting.  I didn't want to wake up Luke and Matt, so I desperately knocked on the cinder block wall separating the boys room from our own.  Thankfully Nate woke up, just in time to clean up Will's puke off the floor.

But even more oddly, Will started to have a seizure.  In the middle of the night.  After being asleep for hours.  This was totally unusual and out of our typical routine (if you can call it that).  Will's seizures have always been involved with the transition from wakeful state to sleeping state.  This was unnerving to say the least.  Who's to say I would have heard Will cough like this at our house, where I am not a few feet away?  Ugh... more questions than answers. 

And more reason to believe that our trip to Johns Hopkins next week is the 100% right thing to do.

We moved Will into our room and Nate into Will's bed.  I slept fitfully for the rest of the night - I kept waking up to make sure that Will's eyes were closed and his breathing even.  Whenever we administer Will's emergency seizure medication, he's always out of it the next day.  We all woke up pretty crabby.  Thankfully one of the other things to love about Hungry Mother State Park is that it is less than 4 miles from a hospital.  Which thankfully we did not need.

After breakfast, we decided to load up the boys and go for a walk.  It was very cold and blustery, but we thought it was the right thing to do to shake off the bad feelings from the night before. 

The park was built in the 1930s by the Civil Conservation Corp as a part of FDR's New Deal.  The care they took is apparent in every aspect of the park - stone walls everywhere, even tow path around Hungry Mother Lake, lots of picnic shelters, cabins, and a huge 8 bedroom lodge.  The park is very hilly and scenic.  In the summer, I imagine that it gets very busy with a swimming area, restaurant, 3 separate camping pods, and an amphitheater on an island in the middle of the lake (you walk across a bridge to get there).

We did a good bit of walking.  Nate, Otis, and I were exhausted!  But happy to get out and about and explore.  We headed back for to the cabin to warm up with some hot chocolate and eat lunch.  Afterwards, we all took naps except for Luke (who kept himself busy with toys and his Vtech computer).  It was nice to take a nap! 

I know it might seem strange to drive 4 hours from our house, just to walk around, make food, and sleep... but it was all about relaxing and togetherness.  The cabin doesn't have TV, telephone or internet access... and sometimes being unplugged is a great thing.  We spent some time teaching the kids to play go fish, making s'mores, and taking walks just to see the sunset and a little bit of snow.

Unfortunately, we had a little too much togetherness by Saturday night :)  We were all cranky again, having to break up too many sibling fights between Luke and Matt, and dealing with Will's crankiness from the emergency seizure medication.  Bed time couldn't come soon enough!

We had no seizure issues overnight.  We had breakfast and started to pack things up.  We tried to get a group shot before heading out, but those never turn out right!  We take what we can get!

It was a great park.  I'd love to go back again, perhaps when things aren't quite so medically unpredictable.  I was happy, though, that we went and spent the time away.  We have so many questions to be answered and plans to be made in Baltimore next week.  Knowing myself, this weekend would have been miserable sitting at home and wondering. 

I am a mother who wants answers.  I am a mother who wants peace.  I am a mother who wants her child to be healthy and safe.  I am a mother who wants to make it all right.

But for now, I have none of those things.  For the weekend, I was an active, engaged, unplugged Hungry Mother.  And that was ok too.

Friday, February 24, 2012

To My Dearest Audience

An open letter to anyone who comes upon it:

I've been blogging now for 3 and a half years!  It is hard to believe that when I started this blog, I was sitting in the hospital with Luke for his second shunt revision surgery in as many months.  I started the blog at that moment because I needed an outlet and a way to tell everyone everywhere what was going on.  Over the past several years, the blog has morphed several times, photos have changed, and I have changed and grown as well.  I realized that I still blog now for the voice it gives me to tell you all what is going on with us.  But it is also therapeutic for me.  I work through a lot of thoughts and feelings sitting here in front of this computer.  I get so much out of it!  All the emotions and fears and laughs I write about are all so genuine, and moments to be remembered... whether they are good or bad or funny or terrifying or moments that I think I'd like to forget. 

I hope that you get something out of reading about us.  From the comments and notes I occasionally get from readers, I know there are a lot of people out there who care and follow us... some of whom we know, and a lot of whom we don't!  And I love that about blogging!  The ability to reach an extended family of people who just want someone to pray for, care about, check in on, and root for.

At the encouragement of a couple people in my life, I have decided to try and get our little blog noticed by some of the larger blog communities like Blogher and Babble.  I am hoping you can help me expand our audience, increase our readership, and spread the craziness that is the Slaviks Outnumbered!

Are you a regular weblog follower?  Do you visit www.ncslaviks.blogspot.com every day as a part of your daily routine?  I love you!  Please consider scrolling down the page a little bit, find the FOLLOWERS section along the right side, and signing up as a follower of this blog. 

Do you get our blog updates via email?  If not, do you want to?  Scroll down a little bit, look along the right side for a box that allows you to input your email address.  You'll get a note to your email inbox that requires you to verify that you want to receive our updates whenever I post an update... and once you verify, you'll get our smiling faces in your inbox 4-5 times per week!  I can think of nothing better :)

If you already get our email updates, you'll notice at the bottom of those notes that there is an easy link to share the updates via email and Facebook.  If I ever post something that inspires you or makes you want to share, please feel free to email to your friends or post on your Facebook wall!

You will also notice at the bottom of each post on the blog there is a block of options for several social media sharing sites - Gmail, Blogger, Twitter, Facebook, and Google+.  I've tested out the Facebook option several times recently on my Facebook page, and it makes it very easy to share blog updates.

I love the comments that I get on the blog.  There is an option to post comments on the weblog at the bottom of each post.  I've made it easier to post comments, so if you've tried in the past and gave up because it was too annoying, try again!  And if you've wanted to post a comment before on a post that really spoke to you, please feel free to do so!  We love to know who is following, and what they get out of reading our story.

Anything you can do to help us spread our message and increase our audience is greatly appreciated!  Our story is unique and on-going... it is an adventure, and certainly one that we enjoy sharing.

Have a fabulous weekend,

Wednesday, February 22, 2012

The Arc

Perhaps you've driven by... a non-descript building with a name out front, simply saying: The Arc.  Did you ever wonder what it was?   Well wonder no longer.  Here's your "you learn something new everyday" moment.

From www.arcwake.org: The Arc, a national organization serving people with disabilities, was founded in 1950 by a group of parents concerned about the lack of services for their children with developmental disabilities. The Arc movement quickly spread throughout the United States. Since then, nearly 1000 state and local chapters of the Arc and their members have advocated for community services to support people with disabilities and their families.

How great is that?  This is an organization whose one mission is to help people with developmental disabilities.  By creating supported employment opportunities, teaching public speaking classes, and various other community partnerships and outreach programs, the Arc is an organization that makes a difference in the lives of thousands of people - to help them be more independent, confident, happy and supported.

In Wake County, where we live, the local Arc chapter offers assistance to families as well - offering guidance through the IEP process (which was a very intimidating and frustrating process for us!) in addition to advocating state and local government to pass progressive legislation in support of citizens with disabilities, and promote research that enables people with all abilities to live more independently.

The Arc of Wake County has its annual Gala this coming Friday.  Tickets are $75 per person, and go to such a worthy cause.  Dinner, dancing, silent auction... at Marbles Children's Museum in downtown Raleigh.  Sounds like a good date night to me!  I know it is short notice, but if you're local, like to get all gussied up and hit the town, and have the ability to support this fantastic organization, I encourage you to purchase your Gala tickets here.

If you aren't local to the Triangle area, I encourage you to find your local Arc chapter here.  There are Arcs in every state, and thousands of volunteering opportunities.  The Arc is made possible through generous volunteers, charitable donations and memberships, and helps thousands of people across the country! 

Tuesday, February 21, 2012

The few, the proud... the people who go to marine museums when its really cold outside

We're not a family that gets held back by a lot.  Cerebral palsy, being outnumbered by kids, weather... not a big deal.  We like to get out and about.  Sometimes to find some fun, sometimes to combat boredom, and sometimes just to try something new.

We visited my dad (Grandpa) and stepmom (Grandmama) for a quick trip this past weekend in Maryland.  Sometimes I miss living in Maryland... the proximity to DC, the Chesapeake Bay and my family and friends can't be beat!  When we visit, I like to do something quintessentially Maryland... eat crab cakes, visit the aquarium in Baltimore, drive by my old high school and convince Nate that it does NOT look like a prison.  Fun stuff.

This past weekend, we decided that we would venture across the Chesapeake and visit the Chesapeake Bay Maritime Museum in St. Michaels.  Seemed like a good way to share some Bay history with my family.  Who cares that as the week went on, the weather forecast looked more and more miserable!  We're Slaviks!  We do crazy things sometimes.  We grabbed Nana Jean, my brother Drew and soon-to-be sister-in-law Nicole to torture them have them come with us for a great time.

The temperature kept dropping.  It snowed a little the night before, and rained during the morning of our planned day trip.  We persisted.  We took a long detour along the Eastern Shore to get past a bad accident on Route 50.  Finally we arrived.

And the first thing out of our mouths... is it even open?  There were maybe 2 cars in the parking lot.  Things were looking grim.

But we unloaded anyway.  Nana in her wheelchair, Will and Matt in hiking backpacks, Luke bundled up on foot.  My kids refused to wear gloves.  Off we went to find some people... some mariners... some true grit Marylanders.

The on and off sprinkly Rochester-esque rain persisted for the remainder of the afternoon.  We were happy to find that the visitor center was open, as was the museum.  I think we woke the staff of the museum from their mid-winters nap, though, when we walked in the front door... I mean come on.  Who goes to an outdoor maritime museum in the middle of February?

The museum is made up of several buildings, and the only real outdoor part is when you're walking in between the buildings.  I suppose when the weather is nice, one might dawdle outside between buildings and enjoy the views of historic St. Michaels.   Not us.  The goal was to get between the buildings quick, to stay warm and dry!

All weather jokes aside, what a great place!  We toured a skipjack restoration project, walked through a grounded tug boat, enjoyed some Bay history, climbed in an old crabbing boat, went below deck in an oyster boat, and saw some ducks.  We hadn't gotten to the steamboat building by the time the museum closed for the day - we were all kind of bummed that we didn't get to finish our tour.  Aside from Will's antics, we had a really great time.  I think we'd like to go back again... but maybe when it is more than 30 degrees outside, the lighthouse is open, and you can take boat tours of the Bay.  I think Will would LOVE that.

Everyone was frozen by the end.  We loaded back into the vehicles and headed home (stopping at High's for some hot chocolate and snacks on the way - another Maryland tradition - haha).  The skies opened up for some torrential rains on the way back to Shady Side.  It was like Mother Nature was saying "hope you enjoyed your time outside and congratulations on getting back into your car."

So without further ado, our visit to the Chesapeake Bay Maritime Museum in photos...

Monday, February 20, 2012

This message will self destruct in 5 seconds

Last week, at an undisclosed time, at an undisclosed location, and with a room full of undisclosed people, Luke, Matt and I were lucky enough to be a part of the promotion ceremony of my stepfather, Opa, to Chief Warrant Officer 5 in the United States Army. Wow. CW5 is a very big deal.  For warrant officers, there is no higher rank. It is a true crowning achievement to a long and successful military career.

For those who do not know, my mom spent her career in the Army and retired as a Major. I've been to my fair share of promotion ceremonies in my day, but this one was pretty special. And I got to see it through the eyes of Luke and Matt, which was interesting as well.

Opa has been deployed to Iraq twice. The first time, he missed Nate and my wedding, and celebrated in Baghdad with a toast of Diet Coke. The second time, he missed his 10th wedding anniversary with my mom.  It might not seem like a big deal to those outside of it, but imagine missing an entire year of your daily grind.  Twice. While working 14-16 hours each day, 7 days a week, with a couple of hours off for church on Sunday.

Do you know anyone in the military now?  A veteran?  If you haven't done so recently, take a moment out of your day to say thanks. Thanks for the sacrifice. Thanks for the dedication.  Thanks for the selflessness.

And then, enjoy a few photos from Opa's promotion ceremony.  Since the Army now uses Velcro to hold your rank onto your uniform and hat, the idea of having someone "pin" you at your promotion ceremony isn't as dramatic as it used to be.  But never fear, those Army guys (and girls) still get their fun.  The "pinner" now dramatically rips your Velcroed rank off of your chest, and punches you square in order to adhere the new rank.  Thankfully they don't punch you in the head when adhering your new rank to your hat.

Opa was so grateful to have his mom and older brother travel from Wisconsin to "pin" him this time.  It was a great crowning, proud achievement that he could finally share with his family.  You can see the pride on his (and his mom's face!).  His mom couldn't bear to punch him in the chest after "pinning" him... what mother could?  But some of his Iraq buddies weren't so nice.

Luke and Matt did their best to stay quiet.  There were a lot of very quiet people in uniform in attendance at the ceremony, and I think Luke and Matt were a little overwhelmed at first.  Too intimidated to make noise.  Not such a bad thing!  But as the ceremony neared its end, Matt had had enough of sitting down and being quiet.  He wanted to be a part of the action.  I'm not sure if Matt realizes the code and protocols that the Army operates under... but surely they make exception for a cute 2 year old carrying around a blanket like Linus.

So congrats, Opa.  This outnumbered Slavik family sure is proud to have you in our ranks.  Thank you for your service, your dedication, and your patriotism. 

And thanks for the cake.

Thursday, February 16, 2012

Valentine, oh Valentine

We had an eventful Valentine's Day around here.  The day before, I ran around Target like a crazy mama (with many similar-minded crazy mamas), buying boxes of Valentine's for all the boys to hand out.  I suppose if I was as good as the other parents in pre-school, I would have made Valentine's cards for my kids to hand out and packaged small, cute, decorated bags full of candy and little toys for everyone to enjoy.

I'm just not that good.

So I bought the boxes of Cars 2 Valentines with magnets, Spiderman Valentines with pencils, and Scooby Doo 3D Valentines, and spent the better part of an hour writing in the name of each kid in each class (2 classes for Luke, 1 for Will and 1 for Matt) on the cards.  When that was done, I rolled out sugar cookie dough and cut out big heart cookies to decorate.  If you've followed us for a while, you know that this mama likes to decorate sugar cookies!  Good thing everyone else likes to eat them.

It was a late night of Valentine's Day preparation.

I got everyone out the door, dressed in red, and bags of Valentines in hand on Tuesday morning... miraculous!  Nate and I went out to a special lunch at Nordstrom's Cafe, and were planning to spend the evening with the boys decorating those cookies, having a nice dinner, doing baths... the normal stuff. 

But it didn't quite work out that way.  I could tell something was wrong with Luke when I picked him up from day care.  He was listless.  He didn't feel sick.  He was just... down.  It was odd. 

When we got home, Luke perked up and enjoyed some time with Will and Oma while Nate made dinner and I got cookie supplies ready.  Finally, the cookie decorating commenced.  You'll see that Luke's ability to dump more and more decorating icing on cookies has improved, Will was exceptionally tolerant of the whole process, and Matt is now much more excited about cookies!

OK, so doing cookies before dinner probably seems like a bad idea.  In hindsight, it was a bad idea.  I probably should have bagged the whole cookie thing when it suddenly occurred to me that Luke had been so listless when I picked him up because he'd had not one, but two Valentine's parties over the course of the day, and was likely coming down off a wicked double dip sugar high.

But hindsight didn't do us any good on Tuesday night.  Nope.  Not one bit.  We finished decorating the cookies, put the supplies away, and set down to a lovely dinner of pasta and Rao's sauce.  Luke proceeded to push his bowl away.  And this was just the start of a temper tantrum that lasted for more than an hour, and consisted of Luke spewing the following pre-school obscenities at us:

Mommy and Daddy, you are the meanest Mommy and Daddy ever!
Mommy and Daddy, you aren't my best friend!

...and the worst one ever...

Mommy and Daddy, you can't come to my party!

I am not exactly sure who Luke thinks actually plan and carry out his birthday party, but I don't think he was actually thinking logically.  He just had too much sugar.

He went to bed without a bath, but with a heck of a fight.  And within 2 minutes of laying down and giving his teddy bear the choke hold of love, Luke was out like a light.

After everyone was asleep, I proceeded to throw out the remaining Valentine's candy.  I know that in a typical day, Luke doesn't consume 1/10th of the sugar he consumed on Tuesday...  but I didn't even want to risk a repeat.

One Valentine's Day a year is probably good enough.

Wednesday, February 15, 2012

Trying it out - an update

We're a week into the night time trial of baclofen.  When you're as tired as we were, the irrational hope was that the effect would be immediate.  The first night of the trial, there was no difference.  Will woke up 7 times that night.  We were miserable and a little down on the whole thing.  You'd think that after so many ups and downs during the past 5 years, we wouldn't expect anything to have instantaneous gratification.  But I think we're always hoping for it.  Totally illogical.

The second night was a different story.  Will didn't wake up.  Not once.  His muscles weren't tight.  He didn't seem to care if he was on his side or on his back.  He finally just slept.  Like he hasn't since he was a year old.

This trend continued.  Over the next couple of nights, Will woke up once per night.  Typically around 1a, just needing to be adjusted.  Once per night is tolerable.  Once per night is a whole lot better than 7.

Today I had to wake Will up.  When I went into his room, he was fast asleep.  Slow breathing.  He didn't jump when I turned off the sound machine.  He was asleep on his belly.  Arms relaxed and up by his head.  Loose.  Rested.  Amazing.

Will has been waking up happy.  Nate and I have been waking up happy.  Luke has been sleeping in his room, restfully, and waking up without dark circles under his eyes.  Every day since the second day of the trial, we have gotten an amazing report from Will's teachers.  Will has been having great, restful nights which have led to the return of the happy daytime Will we have so dearly missed.  Giggly Will is the best.

There is a possibility that Will will develop a tolerance to the baclofen, and we'll need to increase the dosage.  But now that we know that he was having muscle spasms that were waking him up and causing everyone such misery, it is good to know that we have an effective medication to combat it.  Thankfully there are no drug interactions with any of his other medications!

We're all feeling pretty good.  Sleeping is awesome!  Now let's hope I didn't just jinx us...

Monday, February 13, 2012

Measuring up

When I was Luke and Will's age, my best friend's name was Lizzie.  When I went over to her house, I got to do fun things like drink tea, make "perfume" by mixing together all the kitchen spices I wanted in a baggie, and play with her Siberian hamsters.  One of my strongest memories, though, is that her parents stood us up against the doorframe in their kitchen and measured how tall we were. Nothing made me prouder than being taller than Lizzie... not sure why I thought it was a competition, but I did.

We've never measured the boys against any doorframes, though I've wanted to. Before Will was strong enough to attempt standing, we moved out of our first house.  And we knew our last house was a temporary home.  But now that we're settled into this one for the long haul, it seemed like it was time to add some graffiti to the laundry room doorframe.  Will didn't exactly love it... but things went quickly and were as painless as we could make them.

Will got to wear his braces to help keep his feet flat.  The braces may have added about 1/4" to his height.  But check this out... who's the biggest Slavik?

Wednesday, February 8, 2012

A new trial

We thoroughly expected that once Will was completely healed from his sinus surgery, he would miraculously sleep through the night.  He has been so congested over the past couple of years, that it seemed as though it must be the congestion keeping him awake.

I think Nate will agree with me that Will has been sleeping worse since his surgery, not better.  And while he isn't congested, he wakes up frequently.  A lot.  And while we are pretty well-versed in the act of waking a couple of times a night, crawling out of bed 5 times a night gets old for all of us.

Luke has been having a really hard time with acting out over the past month - both at school and at home.  Our first thought was that it was tied to Will's frequent night time wakings, so last night when things got pretty bad, we moved Luke into our room on a little bed.  He woke up happy and perky (his typical) for the first time in a while this morning, so we knew it was the right move.

This realization was the kick in the pants that I needed to start involving some of Will's doctors on the difficulty we have been having with his sleeping.  I know that it isn't typical for children with special needs to have trouble sleeping, but this is getting to be unbearable.

The first thing his neurologist and physiatrist did was review the sleep study that we did last year.  Remember I thought it was useless?  Well it turns out that one important thing was buried in it, something that we overlooked when we read the original report.  The sleep study showed that Will has periodic limb movement in sleep (which a lot of people have), but his legs were moving enough in his sleep that it was causing him to wake up 5 or 6 times during the night.


The likelihood is that when Will got Botox in his legs last year, this night time leg movement was reduced or eliminated.  Now that the Botox is wearing off, the effects of the limb movement are showing again, especially at night.  And we might be more aware of the situation since we thought we'd be sleeping like kings post-op, not worse than before!

When Will wakes in the night, he doesn't wake up all the way.  He is irritated by something and has rolled onto his back.  We roll him back onto his side, but every single time, both of his legs are rigidly tight.  From his hips to the tips of his toes.  Tight as can be.  The only way to bend his knees and get him to relax is to manually turn his foot inward (thankfully we learned this move from a physical therapist very early on - it has been helpful!).

So with the details on the limb movement and the fact that Will's legs get this rigid, his team felt that a night time trial of baclofen was a good idea.  Baclofen is a drug used to treat muscle spasticity, and it is frequently used to help kids with the same type of cerebral palsy that Will has.  Thankfully Will's tone isn't high enough to warrant baclofen all the time (it can be taken orally or in serious cases, a pump is surgically installed in the abdominal cavity to administer a steady dosage to the patient).  If he took it all the time, we would likely lose the good muscle tone that he has developed to control his head, neck, arms and trunk.

Tonight is the first night of the trial.  If it does what it is supposed to, Will's legs won't move randomly throughout the night and wake him up. And it should be worn off in time for him to use some of his good muscle tone in the morning.  I am anxious to see if this has any effect on Will's night time wakings.  Just in case, I have a bed set up for Luke in our room.  Just in case.

Monday, February 6, 2012


Thanks to Grammy and Papa, all the little Slaviks were decked out in their NY Giants finest for the Superbowl on Sunday.  Nate pulled out an oldie-but-goody to wear - his #10 Eli Manning jersey (thanks Oma).  Luke was more excited about the fact that Daddy was wearing his favorite number than anything else!

We were so happy to be able to share the Superbowl with some other northern (non-New England!) transplants.  But because the game starts so late and our kids are in bed usually by 8p, we stayed at the party until halftime, drove home, did the fastest baths on record, got the boys in bed by 9p, and then watched the rest of the Superbowl on DVR.  We turned off all the phones and computers so we wouldn't be tempted to peek or be reachable to victory revelers before we'd reached the end of the game on our time!

True, when watching the Superbowl on DVR, you miss the all-important commercials.  But it was a small price to pay to see Nate as quietly estatic as he could be when the Giants pulled off the victory.

So now we hit that sports lull when football ends, lacrosse hasn't quite begun, and baseball is a couple of months away.  Good time to cheer for high school wrestling!  Good luck this week to my Coach brother and the Meade (MD) High School varsity team as they head into the end of their regular season ranked #19 in the state!

Thursday, February 2, 2012

I'll take you for a ride on my big green tractor

Luke became the proud owner of a new-to-him PowerWheels John Deere tractor just before Christmas. It came to us after being loved and then abandoned for years by another family with 3 boys (2 of whom are also twins!). As long as we promised to love it and get it working again, the tractor was ours. Nate was up for the challenge. Have you ever seen the price of a brand spanking new PowerWheels?!

After a new battery and some soldering, the tractor was back in functional order. Sure the colors were a bit faded from being out in the elements for the past couple of years, and the dumper doesn't exactly work because it was previously-loved by 3 other little boys. But that doesn't matter to Luke. That tractor is all his. Good thing Matt is a little afraid to ride it, because I think in a few months, we might have a fight on our hands.

Luke's favorite time to ride the tractor is right when he gets home from day care.  When the sun is still out, and we're not ready to go into the house and make dinner yet. It isn't every night, but a couple nights a week we stand out there - Luke on the tractor, Matt on Luke's tricycle, and Will in his chair - and just enjoy the togetherness. And the sound of the on/off motor. There are no brakes. The battery just cuts off when Luke lets off the gas. That took a while for me to get used to, and realize he wasn't skidding out each time he let off the gas!

Luke is getting to be a pretty skilled driver. He also suddenly finds himself as the kid everyone is jealous of! The tractor is fast. Way faster than the Barbie PowerWheels. Such a funny turn of events.

Tonight when we got home, the weather was a balmy 63 degrees (hello, where is winter?).  The tractor was calling Luke's name. 

Everyone rode around for a while, blowing off the steam of the day and relaxing for a bit.  The light was nice for photos.  I grabbed the camera.

As Luke rode down the cul-de-sac, turned around to go back up the sidewalk, to turn around and come back down the street, I snapped a couple of action shots.  I asked him to look natural.  Don't look at me, concentrate on your driving.  This is the only shot that he gave me. Natural, right?

Such a ham.  And so in love with his new ride.  I can only imagine what Luke's face is going to look like in 11 years when he gets behind the wheel of a real vehicle.  With brakes and a top.  He might not be able to see, his eyes will be so squinty and his face so smiley.

Wednesday, February 1, 2012

Bowling buddies

Our next door neighbor turned 7 last week - Luke was incredibly jealous. All he can talk about these days is that his birthday is next month, and the fact that he will finally be 5. And to be 7 is SO much better than 5.

We went to the bowling alley to celebrate this most revered birthday. Will has been bowling twice before - once for Tyler's birthday party and once with his class. He didn't enjoy himself either time, but we thought that since he's doing better with loud noises these days, maybe he would enjoy himself. Luke has only been once (though he is a champ at Wii bowling) with mixed reviews, and Matt has never had the joy of wearing sanitizer-cleaned bowling shoes or sending a 6lb ball careening down a lane. We thought he'd like it though, so we loaded up the van and made an afternoon out of the birthday party and the bowling alley pizza.

Well let's just say that two out of three ain't bad.

Luke was so excited to bowl. Once they hooked our lane up with bumper guards and the metal ramp you push the bowling ball down, he had a blast. He would cheer on his ball, which was so funny. Then he would cheer on everyone else's ball as he patiently waited for his ball to limp its way down the lane.

Twice he decided to forego the ball ramp and threw his ball down the lane. By "threw" I mean that he used all his might to plop the ball loudly onto the lane, and then waited as it rolled about one revolution per hour on its way to its home. Nate had to send a helper ball down the lane to get Luke's ball rolling so that we weren't still waiting for it to hit the pins when they shut the alley down at the end of the night. That didn't really matter to Luke, though. He had a great time just doing his thing.

Matt was hilarious the entire time we were at the bowling alley. He was the only person under the age of four at the party, so everyone wanted to pick him up, feed him, and love on him. He had to keep reminding people that he isn't a baby, and was looking for some sweet bowling action. He loved pushing the ball down the ramp towards the pins, but didn't care to wait to see what happened after that. Literally he would run up to the ball, push it with all his might, and then turn around to see who else had a ball he could push (all the while holding up his hands and cheering because that is what everyone else was doing).

He became the token pusher, and all the party attendees were happy to oblige. He had a great time, then he got to eat as much cake as he wanted. It might have been the best day of his life.

Will... oh Will. So much for thinking you might be past your disdain for bowling alleys. Maybe it is the smell. Or the hoards of people. Or the sound of the pins falling down, or the sound of the ball down the lane... I am not really sure. Whatever it is, Will and bowling alleys do not mesh. We tried to have him sit in his chair and push the ball down the ball ramp. This is about how well that went.

Then we tried to have Will stand and push the ball down the ramp. It went slightly better, but the only place Will didn't have a sour look on his face was when Nate was holding him. And let me just tell you, Will is getting heavy and holding him like a baby isn't an easy feat!

So we made due and did the best we could. We just won't be going back to the bowling alley as a family any time soon. I see no need to torture Will. Unfortunately Luke is now asking for HIS birthday party in March to be at the bowling alley too... I'll have to come up with a much cooler-than-bowling birthday party idea and try to persuade him otherwise!