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.