Slaviks Outnumbered

Hungry Mother

2012-02-26T19:25:00.001-08:00

... 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.

To My Dearest Audience

2012-02-24T06:57:00.000-08:00

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,
Amanda

The Arc

2012-02-22T17:49:00.000-08:00

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!

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

2012-02-21T19:44:00.000-08:00

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...

This message will self destruct in 5 seconds

2012-02-20T18:41:00.000-08:00

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.

Valentine, oh Valentine

2012-02-16T19:33:00.000-08:00

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.

Trying it out - an update

2012-02-15T18:45:00.000-08:00

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...

I'll take an order of ham. Straight up.

2012-02-14T18:55:00.001-08:00

Measuring up

2012-02-13T19:55:00.000-08:00

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?

A new trial

2012-02-08T19:57:00.000-08:00

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.

Hmmm...

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.

Giantitos

2012-02-06T18:59:00.000-08:00

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!

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

2012-02-02T19:17:00.000-08:00

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.

Bowling buddies

2012-02-01T19:24:00.000-08:00

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!

Pizza peek-a-boo

2012-01-30T18:59:00.000-08:00

He won't eat pizza when we cut it up anymore. He insists on eating it whole like his big brother Luke. He lacks the molars and jaw strength to really take a good bite so the cheese just slides off the top and the crust remains unscathed. He doesn't mind. He's a 21-month old big boy. He eats pizza.

And then he plays peek-a-boo with his greasy pizza-covered hands. Pizza night is always bath night. Always.

...on the loss of an -ologist

2012-01-29T18:11:00.000-08:00

Will's sinus surgery is nearly 2 weeks past us now. He had his post-op follow up late last week. We learned that Will had 2 different kinds of bacteria growing in his sinuses, thankfully both of which are common and easily treated.

The fungal results take 4 weeks to come back. Will's ENT felt, though, that because he hadn't gotten any preliminary results back from the infectious disease people, the likelihood of the fungal results coming back positive was very small. We'll keep waiting for this one for the next couple of weeks, just to be sure! A fungal infection would mean that we gain a new -ologist (an infection disease specialist) since they are the ones who treat fungus.

But for now, at least for the next 2 weeks, we are lucky to have lost an -ologist. Based on the fact that Will is doing so well after his surgery, his ENT indicated that we only ever need to come back if Will has further problems. There was no need for him to be followed regularly. I don't know if Will has ever lost an -ologist before... if anything, he gains at least one new one each year. Sometimes two.

Woo hoo! We all can breathe a collective sigh of relief... including Will! Since his surgery, Will has had none of the congestion problems that have plagued him for the past 3 years. His face smells so good - no more 'death breath!' His sinuses now have a new route of drainage, so this ability to breathe should last for the rest of his life. Now when he gets a cold, it should go away in a week or so, instead of turning into a sinus infection each time because nothing could drain away.

So Will's bed time routine no longer consists of taking a long bath, spraying saline up his nose, propping his head up on 2 pillows, turning on a humidifier, spraying him again with saline (and repeating several times through the night). He can finally breathe.

You'd think this would mean that Will is sleeping 100,000 times better now, wouldn't you? Unfortunately he isn't. Though he is not congested and clearly not in any more pain from the surgery, he is still waking several times a night... and pretty consistently too. Each time needing to be adjusted in his bed.

He goes to bed at 8. Wakes up around 10. Wakes up around midnight. Between 2a and 3a, he wakes every 15 minutes. After 4a, he sleeps well. Unfortunately on most nights, this means just 2 hours until most of us in the house wake up.

Will is never awake enough during these times that we worry about him having a seizure. Usually he is back to sleep as soon as we adjust him on his bed. But it is so frequent, and so regular, that it makes us think that there is something else going on. I know that most people ebb and flow in their sleep to a point that they wake up lightly many times a night. And this might be the case for Will. He can't adjust his own position in bed. So for us, his "lightly waking and needing attention" means getting out of bed, walking across the house, adjusting Will, waiting for a few minutes to ensure that he goes back to sleep quickly, and going back to bed. All the while trying not to allow your joints to crack to wake up Luke and Matt, and getting back into bed as lightly as possible to allow your lucky still-sleeping spouse to keep on sleeping!

We thought that Will was waking with this frequency because he was congested and couldn't breathe. Now that we've ruled that out, we've got to think of another cause and proceed down the path of fixing that.

I know I've said in the past that Luke sleeps through Will's nighttime shenanigans. But in the past couple of months, he has been coming into our room several nights a week in the middle of the night. More often than not, he says that he doesn't like sleeping in his room and doesn't like his bed.

It is hard to know if Will's antics are keeping Luke awake. It is tough to think that the best thing for Luke might be to not share a room with his twin brother anymore. Let's hope that Will starts to get the hang of sleeping better, so that all of us might have improvement in that area.

Down for the count

2012-01-24T12:21:00.000-08:00

On Saturday night, Matt woke up in the middle of the night in the middle of a whole lot of sickness. I whisked him out of bed, stripped him down, and changed his clothes while Nate sleepily changed his sheets. We were all back to sleep quickly, but since then, Matt hasn't had much of an appetite.

I didn't think much of it until yesterday afternoon, I started to get the icks. You know, that feeling in your stomach when you know something isn't right and you're about to have a very long 24 hours ahead of you.

Thankfully it appears as though everyone else in the fam has been spared.

I'm still in bed, in the same pajamas I put on yesterday afternoon. Yep, its gross. I've been holed up in our room for the last 24 hours, a self-imposed quarantine in hopes of sparing the remaining 3 Slaviks this lovely illness that my youngest so kindly shared with me. No shower, no food, no contact (with the exception of Nate sneaking in to make sure I haven't died).

I heard the commotion of last night's dinner, goodnights and kisses, cries in the middle of the night, and the fun of getting 3 boys ready in the morning. All from behind my closed door. It was when I heard Will's bus pull up this morning that I managed to pull myself to the window and sneak a peak through the blinds. Will's smiling face on the lift, ready to start his day. Nate holding Luke back from showing the driver how to operate the lift. Matt's little excited hand waving goodbye to the bus as it drove down the street.

Oh, the heartache of missing an entire day of their lives. As much as life can be hectic and loud, and as much as we say all we want is a break... being stuck on the outside looking in makes you realize how being on the inside is the best place to be.

Mountain Climber

2012-01-21T15:58:00.000-08:00

Jack Murray passed away today. Jack had been fighting a terminal infection for the past several years. I blogged about Jack and his family last year when he had a scare and spent a long time in the PICU. Jack was back in the PICU for several weeks in November, and his parents Julie and Brian decided the best place for him to be was at home in the arms of his loved ones. He spent Christmas and New Years enjoying all their love, and went to sleep early this morning. Peacefully.

Please keep Julie, Brian, Kali, Gabe and Casey in your thoughts and prayers. They have a tough road ahead of them. If you have a moment, visit Jack's Caring Bridge website: http://www.caringbridge.org/visit/Jack1. Julie and Brian have done such a remarkable job telling Jack's story and keeping themselves grounded through Jack's illness. They are an inspiration and a source of strength for so many going through similar experiences.

Rapid undulation

2012-01-19T19:20:00.000-08:00

The 2 days since Will's sinus surgery have been full of ups and downs. Not high highs and low lows... just small rapid changes.

The night before Will's surgery, he slept terribly. Even by Will standards. He woke up about 8 times in an 8 hour period. This was after sleeping terribly for the better part of the week before as well. Even though we're well versed in truncated sleep around here, this was getting a bit unbearable. Thankfully the night after Will's surgery, he slept much better. I wouldn't call it GOOD... but it was at least back to normal. He woke 4 times that night.

The day after the surgery, we noticed one single remarkable instantaneous change in Will. His face no longer smelled. This might seem like an odd statement. But for the last couple of years, Will has had bad breath. Even after brushing his teeth, he would still smell stale. It kind of overwhelmed his face when you would get close. We never really talked about it before (even in a 4 year old, bad breath is taboo!), but both noticed the change and remarked upon it. Instead of smelling Will's breath, we could tell what he had eaten recently (strawberry yogurt). So odd.

I had high hopes that the second night after surgery, Will would sleep even better than the night before. I like trends like that :) Unfortunately, Will had other ideas. He woke up in clusters, wanting to be adjusted on his bed. The packing in his nose is starting to break down, and he sounds congested (even though we know he isn't, and couldn't be). We were sleeping terribly, and sleeping hard in between Will wakings. At some point in the night, Luke had a bad dream and came into our room. Usually I wake instantly when I hear Luke walking at night, but I didn't notice him until he was in our bed, practically sitting on Nate's face, and sobbing. Nate was so tired that I literally had to wake him up... with Luke still sitting on him.

Will had a good day today. We decided to see how he would do without Tylenol, and he did wonderfully. He had a great eating day, and his thirst for Pediasure is on the rise.

He took a long time going to sleep tonight. So happy in his bed, kicking around and smiling. After a while, I didn't hear him anymore, and was preparing to hit the blog to post about how well he was doing. I checked one last time. You know where this is going...

Seizure.

So the rapid ups and downs, the undulations... well they have ended on a low point this evening. Will responded quickly and completely to his Diastat, and is back to sleep. He is peaceful. I am upset. I had allowed myself to hope that this surgery and the infection that made it a necessity was somehow having an impact on his seizure frequency. Get rid of the infection, get rid of the seizures. Wouldn't that be awesome!?

I don't usually do this. I am usually very tentative, practical, and realistic about our life. But for some reason with this one, I got ahead of myself and didn't tap the brakes. Slow down. Realize that this sinus issue could be and probably is totally unrelated to Will's increased seizure activity. Just an unfortunate coincidence.

Tomorrow will likely be better than today. Over the next week, Will will continue to heal from his surgery, and by Tuesday, he should be breathing and clear like the day he was released from the NICU (I can't say like the day he was born!) This will be an improvement for Will, and will likely dramatically improve his health and happiness. But it is unlikely to change our next couple months of action... Johns Hopkins in early March for the epilepsy surgery consult.

Goopy

2012-01-17T17:18:00.001-08:00

Today went pretty well! Nate and Will arrived at the hospital on time, and then proceeded to spend the better part of the next 3 hours hanging out together as they waited for anesthesia. We called it "bonding time" rather than a really long wait. But shortly after the pre-surgery anesthesia consult and a quick chat with the ENT, Will was changed into a lovely gown and big socks and whisked away.

We were told that the surgery would take a total of 90 minutes, most of which would be eaten up with set up. They have to get the breathing tube placed, start the IV, administer the anesthesia, position his head correctly, and then figure out how best to get all their lights, fiber optics, and surgical tools up Will's little nostrils. No wonder he came out of surgery with two larger nostrils than he went in with!

The "your table is ready" pager went off almost exactly 90 minutes after he was whisked away. We could hear Will in the PACU before we saw him. He does not wake up from general anesthesia well. But who does? He was mostly just mad. It was not a pained cry that he was making. It was a "what the heck just happened to me... who are these people... why does my nose feel like it is full of packing material... where are my pants" kind of whine.

When we went to pick him up (in hopes of offering some comfort), Will's nose started to ooze yucky post-surgical stuff. I felt bad, but I had to keep gently wiping his nose to keep the ooze at bay. Thankfully it stopped after about 30 minutes.

We were able to calm Will down and he gulped down a small container of applesauce. I think it made his throat feel a little better after the breathing tube he had during anesthesia. They removed the IV and we started to get Will dressed.

Finally we saw the ENT! He told us that everything had gone as they planned. He did point out that when they opened up Will's sinus, what they removed didn't look like "typical fungus." By that he meant that what came out of Will's face, at least at first glance, looked like a terrible bacterial infection. No fungus. The culture that they took is the only 100% positive way to know exactly what had taken up residence in Will's sinuses, but those take 5 days to come back.

No fungus is good. Bacteria is typically much easier to treat.

So then we were discharged. With a prescription for an antibiotic, recommendations for pain relief (Tylenol!), awareness that they had used a disolvable packing in Will's sinuses and that would start to come out in the next couple of days, and a follow up appointment for a week from tomorrow.

Will was so much happier in the car. And then he spent the remainder of the afternoon a little out of it, but still happier than he was at the hospital. We are keeping up with the Tylenol, and things seem to be going well. Will keeps sneezing! We thought for sure this would be painful to him, but he just thinks it is hilarious.

We already notice that his breath smells better. He ate well this afternoon, though he doesn't want to drink. I think its probably difficult to drink when your face is full of packing material. Hopefully as that dissolves, Will's desire to drink comes back.

Thanks for checking in on us today, and for all the positive energy sent our way! Will proved himself a champ once again. He's on the up and up again! Just a little goopy.

Big day

2012-01-16T18:38:00.000-08:00

Tomorrow is a big day for Will. He is on the OR schedule for early in the morning, for a surgery that will hopefully change his quality of life. We've got Will's pump going full speed right now, because he cannot have any more food after midnight. When we have turned off his pump early before previous surgeries, Will hasn't slept too well. I think he's gotten accustomed to sleeping with a semi-full belly.

I'm not too worried about that right now, because Will has been sleeping terribly over the past week. And turning off his feeding pump early isn't the culprit. We know it is another sinus infection, but there isn't much that can be done. No drugs will take this infection away. Sadly, even Mucinex isn't having an effect.

His face is full of something... likely fungus but it could possibly be just a huge mass of something else gross. It has to be painful. And I know it is hard to breathe. He's waking up regularly, with a sharp breath in, then a long pained cry. I feel so bad. We've been taking turns staying up to attend to him, trying to allow the other at least one night of uninterrupted sleep. It has been a long week, waiting for tomorrow morning to arrive.

I'm not scared about this surgery. I know that the days following the operation to open up Will's sinuses aren't going to be fun for anyone. But I feel confident that by this time next week, this surgery is going to make him so much happier, healthier and more rested.

So he'll go in first thing tomorrow morning. Thankfully the hospital schedules kids for first thing in the morning, so they don't have to go without food for too long. The procedure should last less than 2 hours, and as Will is recovering from anesthesia, we're hoping to be able to talk with the ENT. He should be able to tell us a lot immediately about the state of Will's sinuses, their fullness, what he saw, and what he did.

They will send the cultures away to determine exactly what it is that is growing in Will's sinuses and causing him such frequent infections. I am not sure how long those cultures take to come back, but the results will dictate how his ENT will proceed with treatment.

Keep Will in your thoughts and prayers tomorrow. It certainly won't be a comfortable day for Will, but it will hopefully be the first step on a long and airy, breathable, uncongested, fungus-free road for our tough boy.

Geo genes

2012-01-15T18:12:00.001-08:00

My dad has received a new World Almanac as a gift every Christmas of his memory - a cherished annual gift given to him religiously by his mom (Nana Jean). I should say every year but one. I say that because one time many years ago, Nana Jean thought that perhaps she didn't need to buy him an almanac for Christmas anymore. She never heard the end of it and resumed her annual Christmas almanac purchase after much good-natured chastising.

My dad is 58 years old. That's a lot of almanacs. That's a lot of facts. My family has always been into history and geography, and I think that Nana Jean probably recognized and encouraged that when my dad was very young.

We read almanacs and enjoy studying maps. Tell my dad where you need to go anywhere in the United States and he can tell you how to get there... he knows the Eisenhower Interstate Highway System by heart. Unless you like losing quickly at Trivial Pursuit, I recommend you turn down a game with him. Even if you're armed with a World Almanac and he is asleep. He'll still win.

A couple of months ago, Luke asked to see one of the outdated Rand McNally road maps that we keep in the van. I thought it was amusing that he would show interest so young. I told him that Grandpa would be so proud! He asked me to point out where we lived. Then we talked about where all our extended family lives. Afterwards, he could point to different states on the map and remembered who lives where.

For Christmas, Luke got a map puzzle of the United States. Despite our best efforts, Luke has never shown interest in doing puzzles. Not even when he was younger. I was totally shocked when he pulled this new USA puzzle out after New Years and asked if we could do it together. It said ages 6+, but we decided to give it a try.

Luke and I put together the outside of the puzzle together. We looked at the colorful box, and noted how each state had a funny shape and a unique picture on it (peanuts on Georgia, a football on Ohio, and a big boot on Texas). He clearly understood the task at hand. I took a step back to see what he would do.

All of a sudden, he was into puzzles. He kept consulting the box for which color or shape to go after next. He picked the big states around the bottom of the country to start out with, then worked himself north on the eastern seaboard, through the Great Lakes and Central Plains, and finished out the perimeter with the apple state of Washington. Then he filled in the middle. He was good! He obviously doesn't know the names of the states, their capitals, nor does he recall exactly on the map where each state goes... but just give him a couple of months and a weekend with Grandpa. I'm sure its just a matter of time.

It dawned on me that this might have been how Nana Jean felt 54 years ago, when watching her budding spatially-oriented kid and realizing that he too had the geo genes. I kind of got teary, thinking about it that way. Motherhood and pride and amazement still feel the same, no matter what year you exist in.

When Luke was nearing completion on the new puzzle, Matt tried to get in on the action. He would point to a random spot on the box cover, and then pat his hand on a random spot on the nearly-complete puzzle. As long as Matt didn't mess up any of the pieces that Luke had already placed, Luke didn't mind the attention.

When the last puzzle piece went in (that would be the great state of Arkansas), Luke beamed with pride. He completed this pretty challenging puzzle with minimal assistance from me... and I think he knew that his geo geek mom thought that was pretty cool.

Sinus surgery

2012-01-12T19:28:00.000-08:00

We just found out that Will has been approved for the sinus surgery that his ENT recommended. This is a relief. Apparently this surgery is often denied by insurance, but when the reviewers saw Will's sinus CT (100% blocked on the left and 95% blocked on the right), they approved him quickly. I was ready to fight for the surgery for Will but am happy to save that energy for another day... another fight. I am sure that day will come.

So Will's surgery is scheduled for Tuesday. It will take him several days to recover, but we expect that within a week of surgery, he will feel some wonderful relief. I cannot wait for him to experience that! I think this is going to be a great thing for him. Now we just have to wait for the surgery day. Then its a quick 90 minute procedure to go up through the nose, open up the sinuses, get a culture of whatever is growing in there, and clear it all out.

Couldn't come soon enough.... Will is very congested and likely has another sinus infection developing right now. Right on time.

It isn't until the sinus swab culture comes back that we will know how to proceed with Will's treatment. If you've done any Wikipedia searching of fungal infections of the sinus, you know that there are 4 different types and causes of these types of fungal infections. Each one has its own specific treatment. Some are long term, some are short term... just depends on whatever has taken up residence in Will's face.

Tough Mudder

2012-01-10T18:48:00.000-08:00

Ask me if I am a Tough Mother and I'll gladly flex my biceps for you. Heck, if I am feeling goofy, I might kiss my flexed biceps and invite you to the Gun Show. That's just how I am.

But this Tough Mother ain't got nothing on the Tough Mudder... a traveling 10-12 mile obstacle course designed by the British Special Forces to test strength, stamina, mental grit and camaraderie. Even in my fittest of days, I think the Tough Mudder would have landed me on my rear end. Hard.

I was recently approached by my good friend Jaerid. He and I met when he was a freshman at the University of Rochester, pledging Nate's fraternity. Over the course of the next couple of years, we became great friends. We even got married within 2 weeks of each other back in 2003, and I was lucky enough to be a grooms woman in his wedding to his wife Kirstin. Kirstin is a special needs pre-K teacher, so together they understand a lot of what we're going through daily with children with special needs. They have two young boys, similar ages to ours.

Jaerid has been working really hard in the past couple of years to overcome some serious health concerns and get into better shape. He confessed to me that while he was training and feeling down about himself, he thought about Will and all the challenges that he has faced and overcome. And somehow that gave Jaerid the push he needed to keep going.

As the ultimate test for himself, Jaerid decided to complete in the Tough Mudder competition in Mt. Snow, Vermont in early May. Kirstin happily (haha, maybe reluctantly?!) agreed to train with him. Then Jaerid and Kirstin gathered a group of family and friends to help him train and compete in the Tough Mudder, and asked if they could form a team called Will's Warriors. Their goal would be to raise money to help us put Will into some programs that he would really enjoy, but that we might not be able to afford to do. These would include things like therapeutic riding programs!

Of course we were honored and said yes. We were grateful that our friends thought of Will. We feel blessed to have such caring and thoughtful people in our lives. I only wish that we could be there at Mt. Snow to cheer them through their Tough Mudder competition. They haven't ever had the chance to meet Will in person - just felt an intense connection through phone conversations and blog stories about what he goes through.

So if you have an opportunity, check out Jaerid's blog at www.jaerid.com. Check out the awesome Will's Warriors page that they've set up at http://www.jaerid.com/p/wills-warriors-fund.html. If you're so inclined, you can even check out the synopsis that I put together about all the challenges that Will has faced in his almost 5 years! If you're a new blog reader, it might give you some background into our little tough guy. And if you're a seasoned blog reader or have known Will for almost as long as we have, the look back on his life really reminds you how amazing that ear to ear grin really is.

Uplift

2012-01-09T18:55:00.000-08:00

Would you believe it... the reason for my blog silence over the past couple of days has been because I haven't been close to a computer! Somehow the stars aligned, the babysitter worked out, and Nate and I actually got away. Not for a couple of hours, not for an evening... for 2 days and 2 nights. A vacation! I almost forgot what that was.

Nate and I spent the past couple of days at Snowshoe Mountain in West Virginia... the closest good skiing mountain (according to several other northern transplant skiing aficionados we know) to central North Carolina.

We left early on Friday morning and spent the better part of the next 7 hours on county roads and switch backs, making our way first over the Blue Ridge Mountains and into the Allegheny Mountains before making the climb up Cheat Mountain to the resort. At first the skinny curvy roads were fun and the 18-wheelers barreling towards us exhilarating... but after a couple of hours of that, I was honestly just happy that we weren't getting car sick.

We arrived, checked in, suited up in our ski gear (snowboard gear for Nate) and headed to the slopes. It had been 3 years since we last hit the slopes at Elk Mountain in northern Pennsylvania. We were a little rusty, but not too bad!

We did well on the slopes (only 2 falls), braved some more difficult terrain on the second day, had fun shopping for souveniers, eating out, playing darts, and most of all... laughing. Thank you so much Oma for watching the boys, and for Stara, Joe, Michele, Susie and Kemp for helping her!

It was a little strange that there was no cell phone reception on the mountain. We soon learned that due to Snowshoe's proximity to the Green Bank Telescope, there are no cell towers or radio frequencies for a 13,000 square mile area! Talk about radio silence. There were no people walking around on their cell phones, all the kids were skiing instead of texting, and we actually had to use a calling card to call home! So nice in a way...

The boys did seem to miss us (Luke told me that when he "gets 5," he wants to come with us to go skiing) though they enjoyed all the time sans parental law and order. We got home on Sunday just as naps were ending, so we were able to catch up a little that afternoon before the week started again. Apparently they cleaned up the chaos before we got home, because things didn't look too bad around the house.

Of course the biggest concern for us when leaving home for a day or two is Will's care. Let's face it... caring for him is complicated and could easily be intimidating and scary. He is a challenge to feed, takes a number of medications, and has seizures that only Nate and I have experienced. Makes you want to sign up for babysitting, right?

To the best of my ability, but trying not to be neurotic, I developed a spreadsheet of each boy's typical day, including waking times, little habits and -isms, medications, preferred foods, and bed time routine. I gave Will his own page, including the all important sections of "How will I know if Will is having a seizure?" and "What do I do if Will is having a seizure?"

I say "all important sections" because unfortunately Will did have a seizure on Saturday night while we were away. But Oma, Susie and Kemp handled it in stride - they caught it early, read through my instructions, administered Will's emergency medication, and tested for sub-clinical seizures. They called us, of course, but all we could do from our hotel room was offer support and make recommendations for the next couple of hours.

I will be honest. I felt a little helpless and guilty for being away while Will had a seizure. I did not sleep well. My mind kept saying "if I were home, I'd be checking on him now..." But I wasn't home. I wasn't there. But now, a couple of days later when I stop to think about it, I am relieved that we were able to rely on someone else to assist! When you're never sure when the next seizure or shunt malfunction is going to be, it could be fear-inducing enough to keep you alone on your own couch for the rest of your life. I am grateful for the assistance, the confidence, the ability and the willingness of my mother to help us out! Thanks Oma!

Getting out and spending time together is essential for a marriage. A kick in the pants, a push out the door, a reminder that time away is important... thanks Village.

Always something

2012-01-04T15:00:00.000-08:00

Will has had regular sinus issues - infections, drainage, congestion - for several years. He had his adenoids removed in March of 2010, after which time we saw some improvement. But over the past year, Will has had a resurgence of sinus issues. It hardly seems fair given all the other troubles he deals with!

He's been on several antibiotics, seen his regular pediatrician and the ENT a couple of times. Unfortunately for Will, when he's sick he also has an increase of seizure activity. And if that weren't enough, when he's sick and congested, he doesn't sleep well. It all gets very old for him... and for us. We like sleep too! We just don't seem to get a lot of it.

This last time Will saw the ENT, he recommended that Will have a sinus CT. His issues were just too regular, and the doctor wanted to see if there were any structural sinus blockages causing all of these issues. This didn't seem too out of the realm of possibility, because both Nate and Oma have had to have sinus surgeries in their lives for structural problems.

We got the results of the CT today. I was not prepared for the result!

The ENT said that Will's left sinus under his eye showed some abnormalities. He tried to explain the exact abnormality to me, but I didn't catch all the big words. The long and the short of it is that the specific type of abnormality that Will's sinus showed is (9 times out of 10) caused by a fungal infection.

Huh? What about the structural issues we were expecting? Nope, none of those.

The ENT then proceeded to explain all about fungal infections - the only way to get rid of them is surgery. There are no broad spectrum anti-fungal medications that will work. Under general anesthesia, the ENT goes up through the nose, opens up the sinus and clears everything out. They also take a culture while they have the sinus opened, so that they can understand the exact type of fungus they are dealing with in the case that they need to treat it with specific anti-fungal medications post-op.

I had so many questions. The first being: WHEN IS THIS KID GOING TO CATCH A BREAK?

Of course no Earthly person actually knows the answer to that question. But to my medical questions, I learned that fungal infections of the sinus are not uncommon (they are actually on the rise) and can be caused by any number of things. The fact that this is fungal also explains why antibiotics never really effectively treated Will's sinus issues in the past (it always seemed that the second he got off of the antibiotic, he was congested immediately).

There is a 1 in 10 chance that Will does not have a fungal infection. But whatever is causing these abnormalities on his CT is thick and gross enough to need to come out of there - fungus or not. And of course, they can't take a culture to figure out exactly what it is without surgery.

So... more surgery. By my quick count, this will be the seventh surgery of Will's life.

It's always something.

This is an easier decision than the epilepsy surgery. We can see something wrong diagnostically, and there's only one way to treat it. No brainer. How soon can we get on the surgery schedule? The closer we get to sinus relief for Will, the sooner he sleeps through the night and the fewer drugs he takes. And with Will finally being truly healthy for the first time in a long time, he should have fewer seizures.

I suppose to most people this would be a tough thing to stomach and as a parent, would be pretty scary for your child. After all, it is surgery. But to us, this is a real solution to a persistent problem... one that has its insidious fingers entwined in too many arenas of Will's health.

Where do we sign?