Slaviks Outnumbered

... if just for a moment

2013-11-13T19:35:00.001-08:00

I'm sorry it has been more than a month since the last post! I'm desperate for sleep but wanted to give a little update on how things are going. But first, the Halloween photo. The boys dressed up as some of their favorite NASCAR drivers and went trick-or-treating with our neighbor, the kitty cat.

Will's ketogenic diet initiation at the hospital ended when expected, though slightly differently that we anticipated. He was unable to tolerate anything higher than a 2:1 ratio of fat:protein. Typically kids need to be at a higher ratio to reach a state of ketosis, but thankfully for us, Will's body was reaching ketosis at the 2:1. He has been home for more than a month now and tolerating things very well. His school teachers are incredibly supportive of the diet and are helping us maintain it successfully at school. We have kept his diet the same as when we left the hospital since he is doing well, not throwing up, gaining weight, and seizure free... though we do have a couple of keto cookbooks and may branch out into some exciting snacks like butter lollipops in the near future. Will lost his second top tooth recently, so he loves to share his beautifully hilarious gap-toothed smile.

Matt's first season of soccer was wildly unsuccessful. He liked to kick around the ball with an adult, but the second that other kids entered the picture, he wanted a parent or grandparent to pick him up. Not sure if he enjoyed the peloton of chaos that is three year old soccer. He seems genuinely interested in trying new things, though, so last week he and Nate went to their first Daddy-Kiddo ice skating lesson. It went much better than soccer.

Luke is growing up more and more each day. He loves NASCAR, reading chapter books, and the first grade. His latest excitement is telling us all about the Boosterthon Fun Run, which is scheduled for this coming Friday. Can you believe that a year has already passed since Luke's triumphant kindergarten Fun Run? If you want to remember that excitement, or don't remember the story, click here. Remember to keep a tissue in your hand while reading! Luke is noticeably stronger and more coordinated this year, so I am anticipating that the event itself will be less... dramatic. Nevertheless, this is an important day for Luke and one that we are all excited to share with him!

Until next time...

Almost done!

2013-10-09T19:47:00.001-07:00

Will has been doing amazingly well with his transition to the ketogenic diet this week. What a relief that is! Since Monday morning, his dietician and doctors have been slowly transitioning Will from a diet made up largely of carbohydrates to a diet made up almost exclusively of fats.

I know. Believe me. It is still a bit alarming to me too. But the science behind it is proven. The calories are being ingested to ensure that Will will continue to grow. He will get nutrients to ensure his body's needs are being met. I just have to get past the queasiness of putting straight oil into his g-tube. Because that does not sound appealing to me in any way, shape or form.

During the first few days, we worked Will towards a 2:1 ratio of fats to carbohydrates. He was keeping everything down and in a good mood despite the fact that he kept getting small boluses of oil into his stomach.

On the 3rd day, Will was transitioning to a 3:1 fats to carbs ratio. This is when his body started to protest. Basically for every teaspoon of applesauce Will consumed, he had to also get 3 teaspoons of oil. He would burp uncomfortably. He started to vomit. Oh that brought back such bad memories for all of us!

Shortly after the vomiting, Will's blood and urine work came back and showed that while on the 2:1 ratio, Will's body was creating the ketones that he needed for the diet. And his blood sugar was stable. After talking with the dietician, we learned that there is actually no medical need or benefit to continue pushing him to a higher and higher ratio of fats to carbs. We could dial him back down to a 2:1.

This was really good news because the vomiting continued for several hours. And most kids who do this diet need to be stable at a 3:1 or sometimes as high as a 4:1 ratio to get the right ketone types and blood sugar levels.

Thankfully Will woke up in a good mood today. After he got one last vomit protest out of his system, he stayed happy, non-vomity, and in a state of ketosis all day. We are headed home tomorrow to start this adventure there! The landscape in our kitchen is going to change immensely as we are now required to measure all of Will's food intake down to the gram, keep a food and liquid log to ensure he is meeting all of the goals of the diet and requirements for hydration, buy and store gallons of oil, mix medically specific concoctions, and change almost all of the foods that we have worked so hard to get him to eat to this point. We also will start checking his urine daily for ketones, and his blood sugar weekly to ensure he's staying healthy.

But these are the things that we do, and will continue to do! The potential long term benefits of this diet are amazing, and this was the right time to give it a try. We will know in the next couple of months if the diet is working. If it is, we will start to wean Will off of his anti-seizure medicines to see if all of these ketones he is releasing are telling his brain to stop its seizure activity. If we learn that the diet is working to control seizures, we are in this for the next 2 years. Wish us luck!

Keto Round 2

2013-10-06T13:35:00.002-07:00

Nate and Will have left the building... on their way to start Will's 4 to 5 day stay at UNC for Will's ketogenic diet initiation. To read all about the diet and its potential benefits in treating seizures, check out the link here.

Wish us all luck - back when we tried to start the diet in April, Will spiked a fever and the diet couldn't be started.

10 years

2013-09-26T19:23:00.001-07:00

Ten years ago, on September 27, 2003, a mostly sunny Saturday in Endicott, New York, Nate and I got married. Its amazing to me how on that day, ten years seemed like a long time away. And now looking back, it hardly seems possible that that much time has passed.

As most couples do, we spent months planning details of our big day, going through pre cana preparations with the church, and stressing over nothing (although of course it seemed like EVERYTHING at the time). We smiled and laughed our way through wedding showers, grateful for the love of friends and family who celebrated and helped us prepare. We tentatively walked through our wedding rehearsal on the night before... starting to get nervous and excited and sick and smiley all at the same time. I don't think either of us slept much the night before. Its amazing how the mind races when you're on the eve of the biggest day of your life.

On the morning of our wedding, Nate went to breakfast by himself since he woke up so much earlier than anyone else. I went with my mom and bridesmaids to get hair done, and back to our room to get dressed. While my helpful bridesmaids got me dressed, I stared disbelievingly into the mirror.

Was this really happening? Was I about to marry my best friend? Was I about to pledge my forever to the person I knew was the one for me ever since the second that I saw him standing on the Eastman Quad at the University of Rochester?

Somehow in that moment - between the excitement and the nerves and the corset, and with the help of my best friends around me - I took a moment to take a deep breath. It was time.

The van arrived. My dad arrived. The girls started loading on the van. And at that moment, despite all the things I knew were right, I felt the worst nausea I had ever felt. The blood drained from my face. Dizziness. I thought I would pass out or puke right then and there. All over the details that I had stressed over to make the day perfect. If I had to do it over again, I probably would have packed anti-nausea medication in my overnight bag.

Our photographer came knocking on the door. It was time for some photos. I stepped nervously out onto the balcony. And there was my dad. Smiling. I could tell he was as nervous as me. But when you're as close as me and my dad, he can just give me a smile and things are alright. And that's what he did. I am forever grateful. The nerves subsided. I didn't puke on my shoes. Smiles.

We sang Survivor's 'Eye of the Tiger' on the way to the church. I had made a CD of awesome music for the ride (to calm everyone down... err... calm ME down). But the CD player in the van was broken. So we screamed that song at the top of our lungs. And arrived at the church calm. And breathless and feeling like Rocky.

In the mean time, Nate had made his way to the church. He was hanging around with his best man, parents, and priest, calming his own nerves as guests spilled into the pews, listening to our beautiful soloist practice Ave Maria.

Then all of a sudden, in the blink of an eye, the church was filled. The organist started. We lined up. It was a blur. The doors opened. The moment was there. I hadn't seen Nate in nearly 12 hours. Would he recognize me in this get up? Would he turn and run? Did he feel as nervous as I did? God I hoped so (feel nervous, not run away).

And then I remembered the one bit of wedding advice that really stuck in my head from all the months of planning. A special cousin of Nate's told us to push out all of the eyes and the awes and the camera flashes and the nerves... just lock eyes as I was walking down the aisle and don't lose each other's gaze. I caught Nate's gaze. And I don't remember walking down the aisle. I just know that I made it there without tripping (thanks Dad) and that when my memory returned, I was standing next to Nate. We had made it.

We had some special readings at our wedding. We stood next to each other on the altar as the priest gave his homily. We were calm. We snuck glances at each other. We smiled. And then it was time for our vows. Turn on the water works. On this day, 10 years later, I still tear up thinking about our vows.

At that moment, it was just us. I still don't know if there were microphones or if anyone in the congregation heard any of the words we were saying or if we just looked like two sobbing kids standing in front of that church. We looked at each other and recited those promises through tears. Happiness. An overwhelming sense that this was right and true. We had no way of knowing in that moment in time what God and the world and the next 10 years had in store for us. Thankfully for us, we got that great advice 10 years ago and never lost each other's gaze. It was the same comforting gaze that agreed to relocate to North Carolina. The same strong gaze that held mine when we learned our twins would come too early. The same excited and disbelieving one staring into my eyes, holding gargantuan baby Matthew in the OR.

Though most in attendance didn't know it, there was a major flub with our ceremony. After our vows, we intended to have a passing of the peace in place of a communion, during which time on of our friends was going to sing. But the priest forgot about all of that, just remembered that we weren't doing a communion, and basically bum rushed us off the alter. Thankfully the organist caught up, and we walked out of the church a little flustered but smiling ear to ear. And our friend still owes us her beautiful soprano solo!

In the moments after, we were so relieved and calm and happy to be sharing such a wonderful day with so many great people. Drinks and food and laughter and music flowed. We visited and shared stories and tried to take in every moment and savor it. We drove golf carts, my dress strap broke, we ate cake... and oh, how we laughed. When I look back on the past 10 years, my strongest memories are not of the times when we cried or felt fear. My strongest memories are of those times that we laughed. Gutteral, out of breath, falling on the floor, cheeks hurting laughing.

I pulled out our wedding album to show to Luke, Will and Matthew the day that mommy and daddy got married. It was fun to flip through photos - silly and serious - and think about how much we have grown since then. I was struck by the dedication I forgot I had written in the front of the book, dated February 2007 - just one month before Luke and Will entered the world:

And the journey begins...

Dear Nate,

I am not disappointed that it has taken me more than three years to assemble this book. As I look back at these photos now, I am reminded of what a wonderful wedding day we shared with our friends and family. We have grown so much since September 2003. And now, as we anxiously await the birth of our sons, I can only say that I think we've grown as much as we have in order to prepare ourselves for this exciting journey. Although I know we're headed for challenges ahead, I feel strongly that with you by my side, as my best friend, confidante, and unrelenting source of calmness and strength, we will continue to be stronger together than apart and be the best parents we can possibly be. I love you more that I ever knew was possible.

Love, Amanda

True then. Truer today. Happy anniversary to us! I look at us and I am so proud.

First hit

2013-09-22T19:04:00.000-07:00

We've had a busy start to the fall season! Luke is playing coach pitch baseball and has about 2 games per week. The first few weeks were a little rough. In t-ball, no one ever struck out. You were pretty much guaranteed a hit. But since Luke is 6 now, there's no more t-ball. And there's no more guaranteed hits. Although not as stringent as regular baseball, there is a "5 pitch" rule. If you don't get a hit in 5 pitches, then you strike out.

In the first few weeks, Luke struck out a lot. Nate is assistant coaching the team, so I have been watching and listening from the sidelines as Luke cries his way off of the field. After a few zoomed in photos of Luke at the plate, we figured out why he was missing the ball.

So over the next couple of games and with the help of some kind parents with kids on the team, Luke worked on keeping his eye open when the ball was headed his way.

Luke seemed calm going into this past Saturday's game. He was happy to take the field and practice his swings in the on-deck circle. Then it was his turn at the plate. He stepped up confidently. Like a kid who was going to keep his eyes open.

The first pitch went past him. He swung and missed at the second. And then on the third - the 'ting' of the metal bat!! There aren't any photos of Luke getting his first hit because I was too excited to take any! Luke's hit was a blooper back towards the pitchers mound that didn't go very quickly. For what seemed like an eternity, he stood there and stared at the ball. He didn't run to first base. I think he was in disbelief that he actually hit it to its resting spot.

Suddenly he realized that he should go (perhaps it was all of us yelling to RUN!). He ran as quick as possible to first base, and thankfully wasn't tagged out! Then he stood there at first base whooping and hollering and throwing his fists excitedly up in the air. I know you think I am biased and making it up, but the whole bleacher section was also whooping and clapping with him - celebrating his first hit! It was very exciting!! We were all so happy for him, and he was genuinely thrilled with what he had done.

And also, being that this was the first time he'd made it onto base this season, and because there were some good hitters behind him, Luke also got to run home for the first time this season as well.

Luke ended up going 2 for 3 in the game - he got a second hit! And was just as excited to get to first base the second time around. In the last inning of the game, Luke got to play catcher. Is there anything quite so adorable as a little kid in full catcher's gear?

Especially when they try and look tough!

At the end of the game, Luke was awarded the game ball from his coach for his break out performance and his great attitude and sportsmanship. He was very happy and we were so proud of him!

Bye, bud

2013-09-04T18:31:00.000-07:00

We envisioned spending long hours at the pool this summer... swimming, splashing, sliding, listening for lifeguard whistles, and snacks by the pool. And while we tried to go as often as possible, we've come to realize that the boys aren't really to the point of spending hours and hours poolside. That didn't stop us from trying, however! At least one day each weekend, we made the trek to the pool. Average time spent there? 1.5 hours. Including sunscreen application and a snack break.

Oh well. Despite the sometimes cool water temps, the laborious sunscreen applications, and leaving early because someone's baby missed their diaper - we had a great time on our family outings. Luke and Matt both took swimming lessons this summer and gained a lot of confidence in the water. Will and Nate splashed around - Will continues to enjoy kicking in the pool. We tried to get him to wear goggles to avoid getting water in his eyes, but he wasn't really into that. He just calmly closed his eyes and smiled big whenever someone around him was splashing and making waves. Nate got a nice compliment by a woman at the pool.

"I've been watching you," she said. "I watched you last summer too. With your son. You amaze me!"

It's really good that it went that way. Otherwise it totally could have been creepy.

I tried my best to capture some of our fun, enjoying how the boys smiled and played all together. Hoping that when they look back at the photos, they remember the summer they spent squirting each other in the pool with 75 mL syringes and floating in the lazy river. But only in 1.5 hour chunks.

Unlike my pool growing up, our local pool here stays open through the first weekend in October. So late! I'd like to think that we will make some more weekend time to go between now and then... but not sure if that will happen between school and sports! So this is likely our summer pool goodbye... to a good buddy. Until next year! Hopefully we'll see you for longer bits of time :)

Role assignment

2013-07-18T16:42:00.000-07:00

We are in the middle of summer craziness. Track out camps. Full time CNAs. Swimming lessons. Yucky heat. Humidity. Lots of sweaty boys. Makes bath time all the more important.

Tonight Matt and Luke took a bath together. They spent some time splashing around. Then I handed Luke his washcloth to clean himself while I attended to little brother. When Luke was all done he asked to get out of the bath. I told him he had to hold on because I needed to check how well he got himself clean.

"Why do you have to check, Mommy?"

I thought for a moment. "Well buddy, that is what mommies do. We check on things. I check you when you are sleeping. I check that you wear sunscreen and eat your lunch. I check on when you go back to school and what school supplies you need when you go back to school. I check on when your next doctor's appointment is and that you ate your vitamins."

My answer seemed to make sense to him. Then he asked me what daddies do.

I took a pause again. I wanted to come up with a good answer. Something that gave Nate credit for all that he does. Something that doesn't play into gender stereotypes. Something that didn't come off as silly and sarcastic.

Apparently my answer took too long. Matt spoke up.

"Lukey, daddies drink beer."

Luke nodded his head. Happy with the answer. And bath continued without another word about it.

Hello, Nostalgia!

2013-06-03T20:27:00.002-07:00

I can recall when I was growing up, traveling south in Maryland to spend long weekends in Solomons Island. This was primarily a crabbing and fishing town in the southern part of the state, and has maintained a lot of its quaint character. We always stayed at a Naval recreation center when we visited, and we always stopped in to the Calvert Marine Museum for a day trip.

I actually don't really remember visiting the museum. What I remember is that there was a lighthouse outside of the museum, and I loved to climb the red steps inside of it and imagine what life would have been like if I had been born 100 years earlier and was the daughter of a lighthouse keeper. Sigh. Back then I thought it was romantic. Now I realize that I probably read too many historic novels.

The lighthouse at the Calvert Marine Museum is called Drum Point Lighthouse, and for those familiar with the Chesapeake Bay, used to be located at Drum Point. This is about a mile east of where it is currently located. The lighthouse once sat out from land, and was only accessible by boat (imagine that solitude!). Over time, through processes both natural and man-made, the lighthouse eventually sat on dry land and was of no use to boats navigating on the bay. They decided to move it to the museum rather than tear it down. Thank goodness.

When we were in Maryland recently, Nate and I decided to take the boys there. It has probably been 20 years since the last time I saw that lighthouse, but I got a little lump in my throat as we pulled into the parking lot.

We bought our tickets, and checked out the actual museum - it was nice but not really set up for kids. We walked outside and the boys ran towards the light. They climbed the steps up to the platform. I wanted to be nostalgic, but I was ... freaked out! All I could imagine was them taking a mis-step near the fencing and plunging down into the Bay. I wonder if my parents felt this same fear when I explored this same lighthouse so many years ago?!

Thankfully I calmed down a little bit and we climbed the ladder from the platform up into the actual house. Nate - with the agility of a ninja - maneuvered himself and Will through a 2 ft by 2 ft hatch into the house. It was impressive.

The boys enjoyed seeing all the historic stuff in the house - the telephone, the wood burning stove, and of course, the potty.

We enjoyed the view of the marina and the Bay from our perch high on the lighthouse. As we were descending the lighthouse steps (careful and cat-like, with kiddo hands securely held), the museum's boat was returning from its daily trip. Matt got a kick out of it watching it sail in and dock. Next time we will plan to go on the boat trip while there!

On the way out, I read on a sign that the museum actually also owns another lighthouse a few miles down the road. I had never heard of it before - Cove Point Lighthouse. Not only is it still functioning, but you can actually rent it on VRBO! I might just have to figure out a way to make that happen... hello nostalgia!

The letter of the day is... aaaaaaaaaaargh!

2013-05-28T18:41:00.000-07:00

When I have spare time (when?) I like to scrapbook about all of our adventures. There is a store locally (Archiver's) that has a wonderful selection of scrapbook paper and decorations. Walking into that store is like instantaneous inspiration. I pick up paper that I am going to use right away, but sometimes will grab something just because I like it... and then I find myself on a mission to find a reason to use the paper.

Case in point: several years ago, there was an adorable pirate paper that I HAD TO HAVE. I began researching pirates on the east coast. After learning about Blackbeard, the Graveyard of the Atlantic, and all other things ACTUALLY pirate... voile. Pirate Adventures of the Chesapeake. #1 Trip Advisor activity in Annapolis Maryland. Good thing we have adventure-loving family and friends in the Annapolis area!

So this past weekend we headed up for Memorial Day. I packed shorts and t-shirts. The weather didn't top 60 degrees, so on our way to the pirate ship we made a mad rush into Old Navy to find some cheap pants. We met our friends, scarfed some lunch, and checked in for our sailing time.

Its not easy becoming a pirate. First things first, you either get a tattoo or some battle scars, and raid the chest of pirate clothing. Pirates are tough.

Next you learn some pirate lingo (scream AY! for yes, scream ARGH! to be scary) and some pirate mannerisms (scream don't whisper, finding treasure is very important, etc). You learn to squeeze your fist and look scary.

And finally, you are a pirate. You sneak through the parking lot and board your pirate ship. Thankfully this pirate ship has a flat deck and a strong crew!

Before you go any further, you'll notice that there aren't a lot of photos of Matthew here. That kid caught sight of those pirates and didn't want anything to do with them. He didn't leave my lap or Nate's arms for our entire adventure. He wanted nothing to do with face painting or dressing up like a pirate. NOTHING.

Once everyone got their sea legs, the crew raised the pirate flag and we left the dock. We traveled a random path around the Annapolis waterfront, waiving un-pirately at people enjoying their lunches at cafes and aboard other boats. The crew kept the kids all incredibly engaged and involved, all the while keeping the parents entertained. The whole thing was superbly done! The crew clearly love kids and love playing pirate! They didn't break character at all, and they were hilarious.

Luke was excited at the opportunity to check out the treasure map. He helped Captain Rusty roll the map out, and tried to help find the treasure. Along the way, the crew told them the story of the dastardly Pirate Pete, who always stole their treasure. As we sailed along the harbor, we came upon Pirate Pete hanging out in his dinghy in shorts and a t-shirt. Remember the temperature I mentioned?

As Captain Rusty commanded, the kids all took their spots at the water cannons along the side of the ship. And with 4 successive passes, the kids each doused Pirate Pete with water, and knocked him off his little boat. That dude must have been freezing.

After we stuck it to Pirate Pete, we found a black buoy with a white X painted on it. Crewmember Boots raised the treasure chest out of the water, and everyone got a handful of treasure to take home with them.

All in all, a great adventure! And now I have some scrapbooking to do... gotta dust off that beautiful pirate paper now that I finally have a reason to use it!

1 down, 59 to go

2013-05-21T18:53:00.000-07:00

Our kids were all late teethers. Between Luke, Will and Matt, only Will had poked through a single baby tooth by the time he turned 1. At his last dentist appointment, Luke asked the dentist desperately when he would lose his first tooth. She told him that late teethers like him typically lose their teeth late too. So while the average age of first baby tooth loss is 5, Luke and Will would likely be 6 when they lost their first tooth.

Will visited the dentist a few days after Luke. And he had two lightly loose teeth. We thought maybe Luke would be excited for Will, but instead he burst into jealous tears. He's used to doing things first, I guess. Whenever Will's loose tooth was discussed, Luke turned into a gloomy mess.

We've been wiggling Will's loose tooth regularly. I was paranoid that it would fall out and he'd swallow or inhale it. He seemed to think it was funny when we wiggled it. I was preparing to have to pull it out some time soon.

I got an excited text from Will's teacher today that he had lost his tooth! She had saved it from being ingested (thank goodness) and was sending it home with him. He laughed hysterically when it came out.

Will seemed happy to show off the gap in his mouth. For a while, Luke would approach Will, open his mouth and look inside. He kept quiet. Will didn't seem to mind the attention. After the third time, I asked Luke what he was thinking about... and that is when the drama started. He started crying those jealous tears and dramatizing that Will was going to lose all 20 of his teeth before he even lost one. I tried to explain that his time would come soon, but really nothing could take away his overly dramatic pain.

At bedtime, the boys gathered around Will's tooth pillow. Luke seemed to forget about his sadness for a few minutes and asked if he could put Will's tooth in the pillow pocket. He was happy to help place the tooth pillow near Will's head, and promised Will that he would keep an eye out for the Tooth Fairy. Thank goodness he turned the corner and was excited for his brother... I was envisioning him stealing Will's tooth and trying to pawn it off as his own.

So I am waiting for them to go to sleep so that we can sneak in and play Tooth Fairy. Our first time... the first of 60 Tooth Fairy impersonations we'll do over the next few years. Nate picked up some $1 golden coins. I looked up online that the going rate for a tooth these days is somewhere between $2 and $5 dollars. Sorry kids, we're going for class over volume... plus if we paid $5 per tooth, we wouldn't be able to send you to college. Or get you braces for those big honkin' adult teeth that are about to start pushing through.

Of course

2013-04-10T16:19:00.004-07:00

Of course Will spiked a fever while we were at the hospital.
Of course the side effects of a virus are the same as a negative response to the ketogenic diet.
Of course they sent us home.

Ah, the best laid plans. Of course we'll reschedule.

Jewelry

2013-04-08T17:42:00.000-07:00

I know... I know. Just last week I told you I was taking a hiatus. Well its funny how a small hospital room and a kid asleep at 7:30 at night gives you some extra quiet time.

Before you get concerned, this is a planned hospitalization.

Around this time last year, we were on our way Johns Hopkins, thinking that epilepsy surgery was going to be Will's future seizure control. In the 10 days that followed, we learned that he was not a candidate for surgery. Though a bit bummed, we returned home with a renewed earnest to find a medicine combination that worked for controlling Will's seizures.

Will's seizures returned with a vengeance about 4 months after our Hopkins stay, and in a short period of time, Will went from being on 2 epilepsy drugs to 4. His seizures have been averaging about one per 2-3 months these days, so much more controlled. And we've been able to wean him off of one of the drugs. He's still on 3 of them.

At Hopkins, we learned about something called the ketogenic diet. This is a diet that was developed at Hopkins, and is used to control seizures. Think of it as Super Atkins. High fat, adequate protein and nutrition. Somehow the researchers at Hopkins figured out that when a kid with seizures ate nothing but high fat foods and very limited carbohydrates, their incidence of seizures went down remarkably.

If you ever happened upon a 1997 Meryl Streep made for TV movie called ...First Do No Harm, then you know all about the ketogenic diet.

The science behind this is that when your body doesn't have carbs, it breaks down fats for fuel. One of the byproducts of breaking down fat is a ketone. And a ketone is a natural anti-epileptic. So flood your body with fat, and you flood your brain with ketones.

Because a child's brain is still forming through their late teens and into their 20s, this is the only time to go through with the ketogenic diet. After 2 years on the diet, there is a 50% chance that the child's brain will be rewired and will not have seizures anymore (with no medication).

Of course there's always a 50% chance that it doesn't work and the child still needs medication. But at least you gave it a try.

There are down sides of the diet, of course. Regular nutrition checks are a must because a growing child typically requires a lot of proteins and carbohydrates. For example, you might feed a kid NOT on the keto diet a sandwich with crackers and fruit for lunch. You can't feed that to a keto kid. The keto kid gets a small piece of chicken with a few almonds and a side of mayonnaise. Not lying.

There are potential issues with constipation on the diet, so typically Miralax is required. And some times, the kid's body just does not agree with the fatty diet. We had this issue with Will before we got the g-tube.

We weighed the pros and cons. Ultimately we decided that even though Will's seizures are moderately well controlled on his current drug regime, it would be great to get him off of some of those medications. If it doesn't work, we know that we gave it a try.

So here we are. Will and I checked in at UNC this afternoon. Will got all of his typical hospital jewelry - name tag, falling danger tag, and "don't steal my child" lojack arm band. He tolerated that part pretty well. I think he knows something is up, though, and has been pretty crabby since we got here.

Over the next 3-4 days, they will slowly change Will's diet (and formula - no more Pediasure for us) from high carb to high fat. We'll learn about measuring his food, about creating recipes from a large list of fats, about changing his toothpaste and sunscreen to ones that contain no sugar products (carbs), and my personal favorite:

Chasing his liquid medications (which usually have sugar added to them to make them more tolerable to take by mouth) with oil instead of water, so that we always keep up that ketogenic ratio.

Delicious, right?

We'll also be learning about how to take a urine sample daily to ensure that his body is creating the right therapeutic ratio of ketones to keep his brain in a ketogenic state. We'll likely be taking blood sugar measurements as well, to ensure that he isn't hypoglycemic.

It is going to be a lot to take in, and a lot to get used to at home. But thankfully, after about a month on the diet, Will's neurologists will start tapering down his medications and we'll have an idea of whether or not the diet is working to control his seizures. There's something about not having to wait the full 2-3 years to find out if the diet is having an effect that makes it more reasonable and realistic to me.

Wish us luck!

Hiatus

2013-03-31T18:39:00.000-07:00

You've probably noticed that my blog frequency has dropped off in the past couple of months. I have felt bad about that, but time has not been on my side. I truly enjoy sharing our family's story and adventures, and hope that there are many of you out there who look forward to our updates!

But life is happening around us, and the time to write about it gets shorter with each passing day. Everyone is healthy and happy, so don't worry about that. But after work and school and therapies and togetherness, I find myself debating between blogging and sleeping. Sleep usually wins out, and my immune system has been thanking me.

The next few months promise to be exceptionally busy ones for us here. I promise that at some time in the future, I'll be able to sit down on a regular basis again and share our story. That time just isn't now... and I'm trying my best not to feel guilty about that. I may intermittently post funny quips or photos, so check in on us when you can (or sign up on the blog to receive email updates whenever I post an update).

And no, this is not an April Fool's joke. Its really just unfortunate timing.

March madness

2013-03-19T19:18:00.000-07:00

I grew up in Maryland. My house was less than 5 miles from Cole Field House - the past home of the University of Maryland Terrapins basketball team. My dad was a student at the university shortly after my birth. We were a Terps family. We cheered for all Terps sports, but especially football and basketball. We cheered for all teams who played against Duke.

When I went to Syracuse for graduate school, I had to (sarcastically) beg permission from my brother and dad to cheer for my college team. Having gone to a smaller undergraduate school where the football team played their biggest games on the soccer field, it was fun to go to a big sports school for grad school. But at heart, the Terps are still my first team.

A few weeks ago, Luke broke my heart and cheered repeatedly for Duke when they played a basketball game again Maryland. I was devastated. I had to take a moment to collect myself, and finally convinced Luke that we were a Maryland family, even though Duke was beating the pants off of them.

So imagine Luke's surprise when we took the family to a Duke lacrosse game this past weekend. They were playing against Towson, who he decided to cheer for because "they weren't Duke." He's learning.

It was a gorgeous day, so after the game, we decided to take a walk around campus. Most of the students were either on spring break or in Greensboro for the ACC tournament. Say what you want about Duke sports... they have a beautiful college campus.

When you're sliding into first...

2013-03-18T20:12:00.000-07:00

Oh the life of a two-shunt family. Vomit, headache, sleepiness, fever... for most of you out there, those would be symptoms of a good old fashioned stomach bug. For us, that's a trip to the ER and some serious diagnostics to determine if someone has got a malfunctioning shunt. If you're able to remember back this far, to the first ever NC Slaviks blog post, you'll recall the issues that we used to have trying to decipher between stomach bugs and shunt malfunctions.

And if you're keeping track, Luke and Will last had a shunt malfunction in the August/September time frame of 2008. That was back when we had three shunt surgeries in less than a month. Oh the good times.

And in the case that you were wondering, the typical shunt last 5 years. Awesome.

Luke started complaining on Saturday afternoon that his stomach hurt. We got home from a lacrosse game, just in time for him to run into the bathroom and puke. A lot. He slept for the rest of the evening. He woke up in the 3 in the morning with a fever and another round of yuck. He couldn't keep Tylenol down. Two hours later, he was back in front of the pot.

Unfortunately around this time, he also started complaining of headache. And then he went back to sleep. Add it all together, and it sounded to us and the UNC pediatric neurosurgeon that we needed to make a trek into Chapel Hill to get things checked out.

Off we went. I've learned some things in my years of getting shunts checked out - first I learned that a trip to the ER can be a 12 hour event. Then I learned that once you're in the ER, if you have a shunt and a suspected shunt malfunction, you don't actually need to see a doctor to order a shunt series x-ray and a CT. Perhaps that seems a little weird. To me, its an opportunity to shave 4 hours off of the ER visit. If we waited to see a pediatrician, they would have wanted us to see a neurosurgeon. The neurosurgeon would have come down an hour later to tell me that they wanted x-rays and a CT. And then we would have been at the exact same place, only a few hours later.

Honestly, anyone who has been to an ER knows it is a lot of hurry up and wait. I'd just prefer to wait less. So we arrived in the ER, put in the orders for the radiographic tests, got Luke settled, and waited for his puking to stop. We had been there for less than 20 minutes when they came to get us for the x-rays. We hadn't seen a doctor yet.

He braved it well through his x-rays, holding still, holding his breath and counting to 10 like a little champ. He was a bit concerned about the CT because they wrapped his body with a big Velcro strap to keep him from rolling off the moving table. But he made it through that well too.

We got back to the room just in time for another round of nausea. We saw a pediatrician who said that they were seeing a lot of the stomach bugs going around, and that they were going to take some blood and urine to rule out infection or other non-shunt causes. I was good with this, though I believed firmly that we were dealing with a shunt issue. I figured a GI bug would have both affected... um... other parts of his GI tract AND being that there are several other people in our house, figured that others of us would have been affected. But hey, a couple of diagnostic tests are never a bad idea.

The neurosurgeon also stopped in to see us. He was happy to see that we'd already gotten the x-rays and CT taken care of (little momma pat on the back). He said that Luke's ventricles (fluid filled spaces in his brain) looked a bit enlarged from the last time he got a CT. Of course, the last time Luke got a CT was in 2009, and his brain has done a lot of growing in the past 4 years.

But they couldn't rule out potential shunt issue with the combination of all the symptoms. They thought a shunt tap would be the logical next step. I had to agree. As much as I didn't want Luke in pain, the only way to firmly diagnose a shunt malfunction is to stick a very very very small needle into the shunt (through his scalp) and measure the pressure of the fluid in his shunt. If the pressure was too high, then the shunt was malfunctioning and causing his symptoms. If the pressure was good, then the shunt was working properly and the symptoms were likely caused by a GI bug.

Before they came back in to tap the shunt, they came in to start an IV line in Luke's hand to give him fluids and anti-nausea medicine, and draw blood. It has been a very long time since he's been given an IV (like nearly 5 years!) and although the nurse did a great job, this was pretty traumatic for Luke. He did NOT like that he was bleeding. And he was fixated on the IV when they were done.

The surprise and the prick of the shunt tap drew his attention away from the IV. It was very hard to explain to Luke what was happening or why. We've never actually had the "why you have a shunt" conversation. He knows that he has a bump on his head, but he hasn't seemed too interested in the 'why' part of it yet.

So while the neurosurgeon waited for Luke's pressure to show up on his diagnostic tools, I tried to keep Luke calm underneath the surgical drape. To say it was challenging would be an understatement. He kept trying to grab the needle sticking out of his scalp to stop the pricking feeling. I kept trying to stop him with one hand, all the while holding his chin still and firmly to the left with the other.

I could tell something wasn't going well though, by the look on the neurosurgeon's face. He announced that the pressure was a 9 - which doesn't mean much to me except to know that anything above 12 usually means we're headed for immediate surgery. Then he said that the distal catheter (the part of the shunt that goes from Luke's scalp to his belly) was draining very slowly. He wasn't sure what to make of it, and went to confer with his neurosurgical team. He also sent some of the cerebral spinal fluid to be tested for infection.

Luke didn't care too much about the IV after the shunt tap. At this point, he was exhausted, his stomach hurt, he had a headache, now he was bleeding in two places (not really, but from his 6 year old perspective, you get the logic) AND his head was covered with an exorbitant amount of betadine (the yellow cleaning solution they used all over his scalp before the shunt tap). Thank goodness there was a NASCAR race on to divert some of his sadness. Soon, he was asleep. The fluids and the anti-nausea medicine were making him much for comfortable.

All the labs came back negative. I waited for word on the shunt. Finally, the neurosurgeon came back. It took a while for him to get to his point. But ultimately what he said was that if Luke's shunt was actually malfunctioning, the pressure in his head would have been a whole lot higher. The fact that his distal catheter was running slow says to the neurosurgeons that Luke's body may have actually found another path for the cerebral spinal fluid flow - basically that his distal catheter MAY actually be blocked, but it isn't causing Luke any trouble.

So, everyone agreed that there was no shunt issue and that Luke's troubles were the cause of a GI bug. I never want my kids to have surgery, so this was completely fine with me. Despite everything that had been done to expedite our ER visit, we were still there for 7 hours. Luke was happy to get in the car and go home, and was asleep before we pulled out of the parking lot.

He woke up this morning still feeling very tired, but his stomach and headache had gone away. He spent the day off of school, hanging out with Oma and Opa. He took a nap, wasn't really hungry, but drank enough to stay safely hydrated. None of the rest of us are feeling any ill effects, but just to prove the cause of what we're dealing with, Luke's... um... other parts of his GI tract are now catching up. Hence the immature title of this post.

Yes, officer...

2013-03-12T20:29:00.000-07:00

Luke and Will turned 6 years old this past Monday! On Saturday afternoon, we had a party at the house. Several months ago, Luke came home talking about playing "police" with several friends at recess. I'm always looking for a good party theme, and this seemed like a winner.

The other idea was to do a party at our local fire department - they have picnic shelters that you can use, and as long as there are no fire calls, you're able to tour the building and try out the cab of the ladder truck. If there is a call, however, the sirens wail and thing turn chaotic as the firemen prepare to leave for the scene... and I didn't think that Will would do well in that potential situation.

So I decided to reach out to our local police department, knowing full well that we wouldn't be able to have the party at the police department, but wondering if they could send an officer over to our house for 15 minutes to show the party attendees their patrol car and talk a little bit about being a police officer. I know that a lot of people probably wouldn't have randomly reached out to their local police department, but I didn't think I had anything to lose. All they could say would be no, and then I'd be back to planning a police party at the house with no special guest.

The community outreach contact I spoke to was very nice. I explained our situation with the party and the noise issue, and more about Luke and Will's health background. She indicated that they typically do their outreach in more community-facing situations, but was willing to bring my request up with the Chief. To my surprise, she called back quickly and said they would probably be able to help. As it turns out, the department does a lot of fundraising and volunteering with the Special Olympics, so this was right up their alley.

I shared my excitement and bewilderment at their agreement with Nate and my dad, but managed to keep it a secret from everyone else - most importantly from Luke and Will! About a week before the party, the community outreach contact indicated that there would actually be two officers coming, and perhaps the K-9. Bonus!

To fill the time between when guests arrived and the officers showed up, we had our 14 little boy guests enter the "Police Academy" where they were greeted with a police hat, a shiny new badge and made themselves a nametag.

The new Academy initiates then made their way up the ramp into the house, and stepped immediately into the Booking department. With the help of our government trained fingerprinting technicians, everyone got their full fingerprints done.

After that, the Academy initiates were free to nosh in the mess hall, work out in the gym, or take a turn in the jail.

Nate and I watched the clock nervously. We saw one police cruiser drive by - checking out the house to make sure that the party was still on. They called and said that they were on their way. Go time.

We were wearing orange prison jumpsuits. Nate went out front to meet the police officers. I ran back to the gym and made a scene - my fellow inmate had escaped and I needed everyone's help to bring him back to the jail!

The kids ran in a big group around the house looking for Nate. Luke spotted Nate through the front window, and he and Will led their group of friends back through the garage to the outside. I ran out the front door and managed to catch this shot - pure bewilderment!

The scene they were witnessing, however, wasn't a single police cruiser. It wasn't 2 officers and maybe a K-9. There were 5 police cruisers, 6 officers and a K-9 to meet. Flashing lights on, officers walking up the driveway in a line. What. A. Scene.

There were 30 adults at the party - only a few of whom knew what we had up our sleeves. So they all walked out of the house with looks of disbelief and shock on their faces too. It was awesome! I couldn't stop grinning.

The officers immediately started talking to the kids, showing them the inside of the cruisers (the biggest hit amongst kids and dads was the brand new Dodge Charger), how to turn on the lights. It didn't matter if the kid was in a wheelchair or a walker or talking and walking on their own - the officers made sure that everyone had an opportunity to check things out.

As long as everyone was calm and went over one at a time, we were also able to meet the K-9, Kyra. She was a beautiful shepherd, and took commands in several languages including German and Czech!

And she even came out to pose for a picture with the whole group.

I have no idea how long they were there. Time flew by. Magic. Smiles. It certainly was longer than the 15 minutes I had requested, the 15 minutes they could have easily turned down - but easily turned into the most amazing gift we could have imagined!

We waved goodbye to the officers as they drove up the street with the lights and sirens blazing. I wonder what kind of trouble our neighbors thought we were in!

It was certainly hard to top the visit by the officers, but of course there was cake...

And of course there were buds...

And of course there were twin brothers, to share your most awesome 6th birthday with...

I think next year, we'll pop popcorn and watch a movie for Will and Luke's 7th birthday. This one might be impossible to top.

The start of birthday season

2013-03-04T19:03:00.000-08:00

Most of the NC Slaviks are spring babies - between March and April, we celebrate 4 birthdays. Nate's the odd Slav out (he's born in July). So we've begun the beginning of birthday season. On Sunday March 3, Otis turned 8!

We brought Otis home within a couple of weeks of moving to North Carolina. He was a cute little brown puppy with a couple of spots of white fur. He liked to chew on things (like my brand new Lucky jeans). Aside from a hamster and a couple of goldfish, he was my first pet. He quickly figured out that he'd stay cool if he laid on the air conditioning grate in the kitchen and that if he snuggled in shortly after doing something bad, he probably wouldn't get in any trouble.

I know it sound cliche, but he is our first kid... a good learning experience. We used to take him out on every birthday for a treat and a new collar. He outgrew collars quickly back then. Nowadays, he's had the same collar for a couple years and it isn't in need of replacement. But we still take him out for a special treat.

We went back to our local doggie bakery this year. Otis enjoyed sniffing around, but he was the only dog there this year and once he'd gone through the store, he was ready to sniff somewhere else.

This year's birthday topped last year for Otis because our next stop was the Wake Forest Dog Park. This also doubled as a playground trip for the youngest three Slavik brothers, so everyone had a good time. Otis ran around till his heart was content and he was tired of fending off some... agressive... socially inappropriate... dogs.

Otis took a breather while we ate some dinner and gave the boys baths. Then he perked up again when we sang Happy Birthday to him and gave him his special safe (no chocolate) iced Happy Birthday baked treat.

Happy birthday, big dog! You're a wonderfully patient, understanding, and most-of-the-time gentle "big brother" to Luke, Will and Matt! We love you!

Sore loser

2013-02-27T19:39:00.000-08:00

Luke's got some Baldauf blood. We are a competitive family. It doesn't matter the contest. Baseball. Trivial Pursuit. Go Fish. Scrabble. Tock. Dallas the board game. Guess Who? Ask Nate about the **only** time he ever played Monopoly with me and my Baldauf family. He'll tell you the truth. We like to win. And more than that, we don't like to lose.

Long after I had finished purchasing Christmas gifts last year, Luke wrote his letter to Santa. The only thing he really wanted was a video game. I (Santa) had not purchased any video games. And while Luke enjoyed his Christmas very much, he mentioned that Santa forgot to bring him his video game.

Thankfully for Luke, Christmas with Uncle Drew and Aunt Nicole happened after the actual Christmas. And Uncle Drew happens to have some ins with Santa. So Uncle Drew and Aunt Nicole totally rocked it out of the park when they showed up with Mario Kart for the Wii and two new steering wheel controllers to drive.

Luke has been doing better with behavior at school these days, and when he has a good week, he is rewarded on the weekend with some Mario Kart time. He loves to play his new video game. He takes it very seriously. He puts his whole body into moving that steering wheel around, often bouncing around an area about 20 square feet as he maneuvers his way around the track.

Nothing seems to make Luke happier than racing against someone and winning. He loves to race as Luigi and laughs whenever he passes you. He hasn't mastered the art of the graceful win yet.

When you play Mario Kart, the Wii also puts other racers in the race. These are other Mario characters (Luigi, Bowser, Peach, etc) and run by the gaming system. Usually there are 12 carts on the race track. They're typically pretty decent racers.

We weren't quite aware of Luke's love affair with winning (and opposite-of-love-affair with losing) until he lost a race. He was happy and doing well throughout the whole race, but at the very end he lost his lead. Really lost. Like he came in 12th of 12 cars.

And when Luke realized that he had come in dead last, he lost it. LOST IT. MELTDOWN.

One of those moments as a parent when you aren't sure if the emotions are real. Could he truly be this upset over a game? His reaction was so strong and pure that it had to be real. I felt bad that I was taking pictures.

Luke was having a hard time calming down. We asked if he wanted to stop. He asked to race one more race. He sat down with Nate again, holding back his anger and sadness, waiting stoically for the next race to begin. In a minute, he was bouncing out of his seat again, throwing all of his being into steering the cart.

In an instant, the race was over. Luke looked at the finish board. He had come in 11th... one of the other characters had come in 12th.

Success. All was right with the world. He might not have won like he really wanted to... but he didn't come in dead last. And he was okay with that.

Measuring time

2013-02-26T18:42:00.001-08:00

Seems like annually, in the throes of cruddy February weather, we get the notion that it is time to measure the boys' heights. Time to line them up against the door frame in the laundry room and make those marks to show a year of growth.

What big boys we have!! Will is still leading the pack at nearly 44 inches. Luke is pushing 43 inches. And Matthew posted the biggest height difference from last year, now measuring in at nearly 37 inches tall. He grew 4 inches in the past year! Will and Luke each grew about a 1.5".

Thankfully everyone had a good time with the measuring and enjoyed seeing how tall they were a year ago, and how much they've grown!

Our excitement over everyone's growth was a bit hampered today, however. Will went in for his regular Botox shots in his hamstrings. While he was there, his height and weight were measured. And although Will has followed his growth curve for his height over the past year, his weight has dropped lower on the curve. This means that he did not gain weight proportionally to his height increase.

You may recall that we've been fighting this weight fight for a long time. It isn't new. But it was a bit of a shock, since Will has been gaining weight steadily since he got his g-tube in 2009.

This past year has been busy for us. We had to focus our attentions on the most critical and pressing issues. For Will, this meant getting his seizures under control. As much as I'd like for us to be able to focus on everything 100% all of the time, our focus on Will's feeding therapy dropped off a bit. And then with the transition to a new kindergarten program and a new nursing assistant, Will's daily intake of calories has dropped.

Don't get me wrong, he is still eating and drinking by mouth and getting calories in his g-tube overnight. He hasn't dropped weight - he just hasn't gained as much as he should. To remain healthy, we need to get him back to his growth curve.

So now, we return our focus to the arena of food intake. Re-focus the focus.

Be an advocate

2013-02-20T18:48:00.001-08:00

Nate and I have never known parenthood without the reality of special needs. First it was pre-parenthood when I was pregnant with twins - special high-risk doctors appointments for a high risk pregnancy. When Luke and Will were born, we learned all about the medical needs of babies born too early. And since they were very young, we've dealt with the reality of regular doctors appointments, medications, therapies, seizures, nebulizers and everything in between.

So from day one (or pre-day one, really), we've had a lot on our minds. It took a while for us to get our heads around our new and surprising reality. Over time and with acceptance and love, we have learned look at the world differently than most parents of typically developing kids. We go to Toys R Us at Christmas time and play with toys on the shelves as we think Will would. We go out of our way to find playgrounds where all our kids can play together. We make appointments for Botox shots. We think about IEP meetings and goals months in advance, and special education and school placement and the safety of bus lifts and tie downs for wheelchairs. We've just gotten to this reality where we think like advocates. We want to make the world a better, more inclusive , and accepting place for our kids.

I learned this week, however, that as good as I have become at being an advocate for Will, I have not yet found my voice to be an advocate for other children with special needs. But I assure you, I will be working to improve myself.

Matthew was off from school on Monday. We spent the day running errands - signing Luke up for t-ball, getting Will his new braces, finding new shoes. Matt was behaving well and starting to get hungry, so we stopped into our local Chik-Fil-A. It was a cold day, and they have an indoor playground - though we've never been there before. We decided to give it a shot.

As we ate our lunch, I noticed that there were a lot of big kids in the playground. LOUD kids. And while Matt can stand up for himself, I was hesitant to have him go inside and play. We finished our lunch, and I tried to trick him into leaving. No luck. That playground had his name written all over it.

So we went inside. I stayed like 2 feet from him as he warmed up to his environment. Eventually he wasn't intimidated by the other playing (LOUD!) older kids, and I sat down... like 5 feet away. I was still hesitant. He's still my baby, despite his fearlessness and bruises like an MMA fighter.

Shortly after, a man came in with a boy over his shoulder. The man was older, perhaps not the boy's dad, but definitely some type of family member or care giver. He put the boy down. The boy was about 6 or 7 years old. And I noticed immediately that he had cerebral palsy. He was standing on his own, but walking carefully on pointed toes with tense arms. He had a smile on his face so much like Will's. He was non-verbal, but clearly very happy about being at the playground. I was excited to see how he played on the playground, and how he shared it with the man.

The boy made his way towards the stairs to the slide. The man walked away.

WALKED AWAY. Like to the other side of the playground. He was not paying attention. In my mind, the next few events happened in slow motion, but they likely happened in a matter of seconds.

The boy slowly and deliberately made his way up the first wide step. It took a while, and he was thrilled when he made it to the base of the second step. But he was exhausted from his efforts. He laid down on the step, with a huge smile on his face. His chest heaved with the effort of his climb. He was very proud!

A couple of children carefully stepped past him. He still smiled. Some of the (LOUD!) kids said hello to him and smiled as they scooted past to go up the stairs. I guess they weren't so bad after all. The last kid to go past, though, wasn't as careful. I stood up to help the boy (the man was still no where near us) just as he was kicked in the head.

I had a lump in my throat. I knew it was an accident, and the walking boy was not acting maliciously. But someone had to help. My feet were heavy. The boy cried. God, he sounded like Will too. I felt so sad. The man must have heard the cry and finally started paying attention, walking across the room to pick up the crying boy. And he just walked them out of the playground. There was nothing more. He had no clue what happened to that boy in his care. Had he paid attention, been realistic and thoughtful about the situation, that little boy could have had a lot of fun with him... it didn't have to happen this way.

I was silent. Now looking back, I know that I should have done something, said something. I should have been an advocate. I don't know that boy. I may never see him again. But I should have stood up for him, since he apparently didn't have anyone else to do it.

As much as the next parent of children with special needs, I want my kids to be accepted. I want them to have friends, and to play and to laugh and to be able to go to the playground anywhere, including Chik-Fil-A! But no where in my mind does it seem like a good idea to leave my semi-mobile, non-verbal child with special needs to fend for himself at a busy playground.

As a parent or a grandparent or a friend - you have a choice. You can be a pushover. You can be an advocate. You can be negligent. You can be outspoken. You can be quiet. You can shake your head and do nothing. You can stand up for what is right.

I challenge you to join me and stand up for what is right. Be an advocate.

My sweet Valentines

2013-02-17T18:45:00.001-08:00

Being the only girl in a house full of boys has its advantages some times. Certainly not when I'm the only one who minds if the toilet seat is left up. But certainly on Hallmark holidays when love is in the air. This momma's a lucky one. Four valentines.

We love decorating Valentine's cookies together, me and my Valentines. We make heart shaped sugar cookies, and then load then up with icing and sprinkles. The boys typically have eyes bigger than their stomachs, though, and end up eating just two bites of their Valentine treats before putting them down and begging for water.

One of the most special parts of Valentine's Day was that Nate worked with all of the boys to make handmade cards for me. I think any momma out there will agree that handmade cards are best.

I opened Luke's card and was so impressed at his writing! Before I could open Matt's card, he pointed out that he glued the hearts on the front all by himself. Such proud boys. Such good Valentines!

Will's card was just beautiful, and kudos to Nate for coming up with the most thoughtful and creative hand stamping out there! We've often done open hand stamps with Will, but it is a difficult and messy operation because Will doesn't like to hold his hands open (especially not when you want him to). He spends a lot of time with his hands in a slightly curved position.

So Nate decided not to go against the grain. He stamped the side of Will's hand, rather than trying to pry his fingers open. And the results were truly of Valentine proportion:

For some reason, I can't get this photo to rotate. But you get the idea! The stamps of the sides of Will's hands made a beautiful heart on the front of the Valentine's card he made for me. Oh, how I love this!

I hope that you had a joyous Valentine's Day!

Boss kicks

2013-02-07T19:32:00.000-08:00

When I was in elementary school, I was friends with a girl whose parents were living an organic and natural life long before it was popular. They practiced acupressure. They used homeopathic remedies to treat ailments. They didn't have a television. They made cookies with carob chips rather than chocolate. It was different from how I grew up, but a positive alternate view of the same world.

Through their family, I learned about composting. I learned about Tom's of Maine. I learned that playing music together (even if you're terrible at it) can be a whole lot of fun for a family. I learned about energy conservation and Warhol and lemongrass and juicers and Emergen-C... from self described former hippies living in the early 1990s in suburban Washington DC.

One day I walked into their house with a new pair of black Doc Marten steel toed shoes on. My souvenir from a family trip to England. I loved those shoes. Before even saying hello, my friend's father commented:

Those are some boss kicks.

I thought he was speaking another language. Then he explained that he was just trying to tell me that he thought my shoes were really cool. The term has always stuck with me, though I've never felt hippie enough to use it. Until now!

Luke was very excited to learn recently that he no longer needs his full foot braces. His orthopedist and his physical therapist decided that he needed less support in his shoes - and they fit him up with a pair of orthotics. The new orthotics fit in the bottom of his shoes, and there is nothing that wraps around the top of his foot.

When we picked up the orthotics, Luke tried them on and a huge smile immediately spread across his face. His former braces were designed to squeeze his foot, but despite all best efforts, they left a lot of red marks and callouses on Luke's feet. He did not like them one bit.

They feel so good, Mommy.

Then he proceeded to run around the orthotics office. The orthopedist made me promise that we would get rid of his brace-beaten shoes and get him fit with good supportive athletic shoes.

We headed down the street to our local New Balance store, where they actually still talk to you when you walk in the door and are willing to measure your feet. They measured Luke's feet and his orthotics, and pointed out a couple of shoes that would work well for him. I gravitated to the Velcro shoes, because Luke can't tie laces yet. But he got a sheepish grin on his face, and pointed to a pair of dark gray shoes with bright green accents... and laces.

The shoe salesman came back with a bright red box with a size 12.5 shoe. I could smell the new shoe smell and Luke's excitement as the salesman removed the New Balance shoe inserts and replaced them with Luke's orthotics.

The salesman patiently showed Luke three times how to tie his laces. He gave it a try himself. When the shoes were properly tied, Luke hopped off the seat. With a twinkle in his eye, he walked around the shoe store. I was surprised that he didn't trip on something - he was more interested in watching his new flashy shoes than keeping an eye out for errant shoe size measurers.

These are fast shoes, Mommy.

He was so proud! I looked at his feet as he jogged proudly around the store - his victory lap. I looked for some discernible limp... a dropped foot or a turned in ankle that would indicate that Luke's feet weren't ready for the jump to orthotics and that I would have to be the one to tell him that he had to go back to his painful braces. But there was no limp. He was walking deliberately. Feet up, straight, no dragging. I couldn't help but smile. And finally, the opportunity I've been waiting for since the summer of 1993...

Those are some boss kicks, buddy.

He looked at me like I was speaking another language. And so the cycle continues.

Raven Rock

2013-02-05T19:59:00.000-08:00

As I previously mentioned, the Baltimore Ravens are Luke's 4th favorite NFL football team. He was excited that they were in the Superbowl. The day beforehand, we decided that we needed a break from all the inside togetherness that the winter months typically bring, and made a bee line for an NC State Park. After consulting a map of parks, we opted to trek to Lillington and introduce ourselves to the appropriate-for-the-Superbowl Raven Rock Park.

Raven Rock is a rock wall that was carved thousands of years ago by the Cape Fear River, which now flows far below it. Though there were several easy trail options at the park, we thought that we were best suited with the 2.1 mile trail that took us to Raven Rock and an overlook high above the river. The park ranger had recommended a 0.2 mile trail for a family with little kids. Ha! We're tougher than that (I thought to myself).

We loaded Will into his backpack on Nate's back (who miraculously held out very well - Will is pushing 45 lbs). We zipped coats, put on hats and gloves, and off we went.

Luke's reading skills continue to amaze us, and he *understandably* was a bit hesitant about starting our hike.

Though the boys were a bit slow-moving at the beginning of our hike, they quickly got excited with finding the next bright orange trail marker. It matched Luke and Will's winter coats.

Raven Rock and the overlook are about a mile from the parking area, on a lovely looping trail through a pine forest. We tend to choose easy trails to take with Luke and Matt on foot, and the trails at Raven Rock were a good fit. Just minimal tripping over tree roots.

As we approached, there were signs pointing us in the direction of Raven Rock. Luke read the signs to us, and everyone was excited to see the namesake destination of the park. Until we saw the steps down to actually get to the Rock. Really we weren't worried about the steps down. It was more about the reality (and pain) of getting everyone back UP those steps that we were thinking about...

But finally we made it! The rock formations were enormous - much larger than what we were expecting given the flatness of the hike to actually get to the riverbanks! We stuck around for a while, enjoying the geology, icicles, and huge masses of tree roots.

At the edge of the Cape Fear River, there was another sign to enjoy. Just in case you thought that *maybe* the trail continued right into the water...

After poking around for a bit longer, we hesitantly made our way back up those steps. I had worn a "just in case" backpack - for Luke or Matt if they got tired on our hike. As luck (or smarts?) would have it, Matt decided that he needed to get in the backpack at the base of that enormous staircase. He was ready to get back out just as soon as we were back on the path. Tough little Luke made it up the stairs all by himself.

By the time we reached the overlook, the excitement of the hike and the Rock and the steps and the river had passed. So like the prepared mama that I have become, I whipped out some snacks and water to assist with mood elevation.

That was short lived though! With less than half a mile to go, Will started crying, Luke started whining and Matt demanded to "pick you up" (which means he wants to be picked up, but NOT in the backpack). Nate and I smiled through it, and we were all happy when we reached the van!

Note to self: pick a slightly shorter trail for the family's first hike of the year!! Maybe we should have listened to the park ranger...

Who's kids like mashed potatoes? Not mine...

2013-01-30T18:56:00.001-08:00

That feeling of helplessness

2013-01-27T17:32:00.000-08:00

If you've followed the blog for a while, you're well aware of the ups and downs we have had with Will's health. Between sinus surgeries, in-patient stays, and seizures, we certainly are no stranger to medical drama.

But for the past month or so, we've been dealing with a new foe. Something so common yet so overwhelming and painful, that we're sort of at a loss for how to help Will.

Yes, I'm talking about gas.

Embarrassing, yes. Necessary, yes. Painful, most definitely yes.

Though we have changed nothing with Will's diet, medications, fiber intake, or exercise regime, several times a week, Will goes from being a happy, giggly kid to crying, and clearly being in pain. Big tears roll down his cheeks. And sitting in his wheelchair, there's really nothing that he can do to help himself.

So we've taken to laying him down on the floor and massaging his belly. He usually cries through this too, until you hit the right spot. Honestly, his intestines sound like Snap Crackle and Pop when you're pushing on them. Ouch.

After a while, he's generally back in a good mood, the painful gas having passed. Usually this is just once a day, but if you can't get the gas out, he could be in pain and crying for a good hour. It is heart wrenching, but we haven't been able to figure out what else we can do for him.

Of course there are more medications that we can put him on - but he's on so many already. He usually eats a fair share of yogurt and applesauce each day. He gets up to walk and stays in his stander for several hours per day. We also lay him on the floor for an hour a day to kick around and play.

What else is there? Embarrassingly, yes... I am asking... what else can be done to pass the gas?