Wednesday, November 13, 2013

... if just for a moment

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...

Wednesday, October 9, 2013

Almost done!

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!

Sunday, October 6, 2013

Keto Round 2

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. 

Thursday, September 26, 2013

10 years

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. 

Sunday, September 22, 2013

First hit

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! 

Wednesday, September 4, 2013

Bye, bud

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 :)

Thursday, July 18, 2013

Role assignment

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.

Monday, June 3, 2013

Hello, Nostalgia!

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!

Tuesday, May 28, 2013

The letter of the day is... aaaaaaaaaaargh!

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!

Tuesday, May 21, 2013

1 down, 59 to go

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.

Wednesday, April 10, 2013

Of course

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.   

Monday, April 8, 2013


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!

Sunday, March 31, 2013


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.

Tuesday, March 19, 2013

March madness

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.