Things you want to ask about but don't...

Will had his second Botox injections today.  The first were back in November, and Will did really well.  We saw a minor improvement in his leg muscle spasticity afterwards.  Botox injections typically last 3-6 months.  We have been noticing over the past month or so that it has been getting increasingly difficult to diaper Will or bend his legs when he's stressed. It was time to give his legs some relief again.

So we went today.  As with the last time, Will did amazingly well for receiving 4 deep muscle shots - two in his inner thighs and two in his hamstrings (back of thighs).  He never cried because he was scared or in pain - he cried and protested fervently when the doctors and nurses held his legs and arms completely still.  Once the shots were done and they released him, the tears and protests stopped.  Instantaneously.   Touche, Will.

For 4 glorious weeks after the Big One at Hopkins, Will was seizure-free.  He slept peacefully and woke up incredibly happy.  We knew the Next One was right around the corner, but would not speak of it!  You know how we feel about jinxing things that way.  But I have been holding off blogging about it, and I know that people have been holding off asking about seizure activity.

Unfortunately, Will has had three seizures in the past 10 days.  We've worked out a plan with his neurologist, and will be increasing one of his drugs and adding a new one in conjunction.  It is frustrating to be back to this point. 

Two of the seizures have been pretty typical.  One of the seizures was really abnormal - it occurred in the morning after Will woke up (like Hopkins) and affected more of his face than seizures normally do.  We gave him his seizure medication (while trying to remain calm as to not alarm Luke and Will who were awake and nearby) and waited.  It seemed to be taking a long time.  Nate got ready to take Will to the hospital.  At one point, we thought we needed emergency assistance at home and we called 9-1-1.  Within a minute of being on the phone with 9-1-1, the seizure stopped in an instant.  Thankfully the ambulance didn't have to come, and after Will slept off the Diastat, he was doing ok.

From the outside looking in, it probably looks like things just returned to typical around here.  You'd probably be right.  Those quiet recovery weeks post-Hopkins were necessary and appreciated, but totally abnormal.  Where would we Slaviks Outnumbered be without a perpetually elevated level of worry?

Mudcat Love

Aside from the Miracle League, the boys have never been to a baseball game before.  We've been so busy doing other fun things, that taking a trip to see our local "big" team - the Durham Bulls - never really came to mind.  Don't get me wrong, we are baseball fans.  We just never made it out.

A couple of weeks ago, the Carolina Mudcats came out to a Miracle League game to be buddies for the boys.  They were awesome guys, took a real liking to Luke and Will... but I will be honest, I hadn't ever heard of them.  One quick Google search later, and I learned that the Mudcats are the Single A affiliate of the Cleveland Indians, and play just 25 minutes from our house.  Who knew.

Luke was still talking about his buddy Salazar a couple of weeks later.  The guy really made an impression on Luke, and Will's buddy Flores tried so hard to make Will enjoy baseball (tough sell for Will).  I decided it was time to head to Five County Stadium and cheer on our buddies.  Memorial Day was coming up, and my dad and Tammy (avid baseball fans) were visiting... and the Mudcats were at home to take on the Winston-Salem Dash.  Perfect.

I wasn't able to find handicapped seats online.  One call to the Mudcats front office, and we had 7 tickets right on top of the third base dugout.  There was a place where we could wheel Will in comfortably and all sit together.  On our way we went.

The day was warm, but the section of the stadium where the handicap seats are is open from the field to the concourse and there was a lovely breeze.  We quickly made friends with the family next to us (who - ironically - had 10 year old boy twins, one of whom had cerebral palsy).  The restrooms, food stands, and beer sellers were just steps away.  The sun was at our backs the whole game - score!  No squinting.

There were fun activities on the field in between innings - Muddy the Mudcat mascots racing on four-wheelers around the infield, ceremonies to honor local troops, sack races, and the quickest tug-of-war you ever saw.  Luke and the 10-year old twin made friends and palled around the open area behind our seats with Matt in tow.  Will did the best that could be expected with all the noise of the crowd.  I think with more exposure, he'll do great.  He didn't even flinch when they launched fireworks after a Mudcats home run - progress!  A year ago, the sound of fireworks would have sent him into a screaming fit.

It didn't matter that the boys didn't know the rules of the game.  What matters more was the excitement on their faces when the crowd went wild and they smiled and cheered just because everyone else was.  And that they had their first ballpark hot dogs.  And that Matt now walks around the house chanting "we will, we will raaa you, raaa you," all the while clapping his hands and stomping his feet in time to Queen.

We all had an awesome time.  The Mudcats put up a valiant effort (we even saw Flores pitch) but in the end, they lost by 2 runs.  It didn't really matter to us.  I think its safe to say we've found a new summer pastime.  The Mudcats are a top notch organization and really make it effortless to enjoy an inclusive, all-American, family night out... wheelchair or no wheelchair.

Steamroller

I may have said this before, but I will say it again: Will loves to be played with.  I am not talking about light delicate little baby games.  I am talking rough and tumble, 'I am all boy' type of play.  The rougher the better.  Most people are unsure of how to handle Will on a daily basis, so the idea of tossing him over your shoulder and running around the living room is probably an insane concept.

Thank goodness Will has been blessed with a daddy who likes to play and isn't intimidated by cerebral palsy.

Nate invented a game a while ago, which he aptly named "Steamroller." Basically when one of the boys is lying on the ground or on their bed, Nate would log roll over top of them while yelling "STEAMROLLER!"  This quickly became a popular game in our house.  There were only two rules: no rolling over heads and no wearing shoes.  Otherwise, everything was fair play.

You might think that with low muscle tone and limited muscle control, Will would have to take a rain check on the Steamroller.  You'd be wrong.  With a little help, Will can steamroll over his brothers like he was made to steamroll.  And once they realized that Will was good at dishing it out, they were quick to steamroll right back over him.

Before you panic, Steamroller is always supervised.  No g-tubes are snagged or necks sat upon.  It is all good, pure boy, rough housing fun.  And the miles-wide grin on Will's face says he loves every moment of it.  Even Otis gets involved - sneaking in ear licks when he can and avoiding having his tail rolled over!

Fort Macon

Whenever we go away for the weekend, we always seem to seek out a historical/educational place to take the boys. I think of it kind of like we're taking them on a history field trip. Of course, living in North Carolina means that we visit a lot of Civil War era places!

Our last stop before heading home from the beach was at Fort Macon, near Atlantic Beach.   And now for your history lesson of the day... Fort Macon was built to replace Fort Hampton - which was intended to protect Beaufort Sound (the pirate Blackbeard's old stomping ground) from the British during the American Revolution.  As Nature would have it, Fort Hampton was plummeted into the ocean after a particularly ferocious hurricane and years of beach erosion, and Fort Macon was built to replace it.  In a more sturdy location.

Fort Macon was commissioned after the War of 1812 showed our nation's leaders that our coast needed to be fortified.  It was completed in 1834 and lived a pretty boring life until two days after the start of the Civil War, when it was seized by militia forces from Beaufort.  The Confederate Army held onto the fort until the middle of 1862, when the Union forces lead by General Burnside attacked the Fort.  The Union Army held the Fort for the remainder of the Civil War.

The US Army had troops at Fort Macon until 1877 - 11 of those years, the Fort served as a military prison.  In 1903, the Army abandoned the Fort and it sat vacant and falling apart until 1924, when it was sold to the state of North Carolina for $1. During the New Deal, the Civil Conservation Corp restored the Fort and built recreation facilities.  

For its last hurray, Fort Macon was rented by the US Army during World War II, to protect the coast from attacks from the east.  Coast Artillery troops occupied the Fort until 1946, at which time it was returned to North Carolina. 

The Fort is beautifully restored.  It was not built in the era of safety, however, and we were met at the entrance with a sign that read:

"This fort was not built for safety.  There are ledges and sharp edges and long ways to fall.  Stay away from the edge.  Do not run.  Be aware of your surroundings."

To me this sign read:

"Why the heck did you come here with three kids... one of whom runs everywhere, loves danger, doesn't listen when you say stop, and will probably fall and break every bone in his body?"

So I grabbed Matthew's hand through his multiple protests, Will was in his backpack (oh yeah, the Fort wasn't built in the era of the Americans with Disabilities Act either... definitely not meant for people in wheelchairs!), and thankfully Luke was obedient enough to stay close.  And we entered, bravely, slightly panicked, and aware of our surroundings.

The boys all really enjoyed themselves.  We had a cool day, with slightly overcast skies - so Will enjoyed being in the backpack and walking around with Nate. 

The Fort is surrounded by a moat, so you have to run walk across a wooden bridge to get into it.  You also have to walk through a heavily gatehouse, which was pretty cool for Luke and Matt.

Once inside, we could see all the beauty of the Fort. The grassy courtyard, the restored cannons, the whitewashed brick walls, steep stairs with ornate handrails leading to the parapet, the proud American flag. We all were very impressed and explored the grounds and the beautifully restored vaulted casements (rooms) that made up the living quarters for the troops. The rooms now house different museum exhibits chronicling the history of the Fort.

Once we were done inside, we ventured back across the wooden drawbridge and took the steepest steps EVER down into the outer ward surrounding the inner fort. These rooms hadn't been restored as intricately, and were pretty damp... but still very interesting to see.

My family always did historical-type trips when I was growing up - Gettysburg, Antietam, Monticello, Appomattox Courthouse, Mount Vernon, Leesburg, Valley Forge, and every National Park on the east coast. It was the norm as long as I can remember and it was fun, and I learned to appreciate a lot about our nation's history because of it. My hope (perhaps not realistic, but still my hope) is that with us starting Luke, Will and Matt on a similar path at a young age, they will know that just because its something educational, doesn't mean it can't be fun too!   As long as you walk.  And don't fall off steep ledges.

True Pisces

If Luke and Will had been born on their due date, they would have been born under the sign of Gemini.  Though I knew from the beginning that it was unlikely that they would be born on their due date or in that astrological sign, I thought it was so cool because Gemini are twins.
As it was, Luke and Will chose to be Pisces.  Slimy, scaly, stinky fish.  Just kidding.  Some of my favorite people are Pisces. 

In true Pisces fashion, Luke and Will love the water.  They have never been scared by the immensity of the ocean, the depth of the swimming pool, or that funny sound the bathtub makes when the last of your bathwater is sucked down the drain.  If it contains or involves water, they love it.  Perhaps you recall Luke's first introduction to the ocean when he was 2 (where he yelled "bring it on!" to the waves crashing around him) or the look on Will's face when he's doing hydrotherapy.

Case in point: the ocean this weekend.  For whatever reason, when we went to the beach, there were no other people in the water.  The water was 75 degrees and the waves were moderate.  Luke went right in.  Followed closely by Nate and Will.  They stayed in the water for an hour and only came in because poor Luke and his 0% body fat were shivering. 

... and then there's Matthew.  Bull-headed Taurus Matthew.  Not a Pisces, or any other Water sign for that matter.  Matt took one look at the ocean, and sat his butt down in the sand (Earth sign!).  Then he started rubbing his face and smeared his sunscreen all in his eyes.  Then the tears started.  Matthew was not a happy beach-goer.  After a while, he got irritated with the sand on his toes and tried to start picking it off, grain by grain.  He quickly realized the futility in that and insisted that I wipe his feet off with a towel and sit him in a beach chair.  Thankfully he's got a skinny brother who couldn't stay in the ocean for too long... otherwise Matt would have sat there mad for a long time.

Oh well, two out of three ain't bad.