Friday, June 29, 2012

The moments I'm happy I blog

I'm doing pretty good with catching up to present with my scrapbooking.  I'm usually happy if I am 2 months behind... I find that when that amount of time has passed, I have processed events or activities enough to journal about them.  Short, sweet, and kid-friendly. 

I am now 2 months behind present with my book.  The end of April.  Hopkins.  I hit a wall.  I printed all the photos of Will at the hospital.  EEG shots.  Wonderful friends who came to visit.  My dad and brother who spent almost every day with us.  From a togetherness and love perspective, it was a good time.  Smiles.  Head wraps.  EEG lines.  Elmo DVDs.  All good.  I didn't take any pictures of the bad.  What's the point?

But I just sat there and stared at the pictures.  I thumbed through paper to find one that was appropriate.  I settled on a yellow background paper with blue, green and pink zig-zag squiggles.  They kind of looked like an EEG print out, so it seemed appropriate.  And still I sat there staring.

I spend a lot of time making scrapbooks.  More often than not, I put the pictures, artifacts and paper in front of me, and within a minute or two, I have thought up a layout.  The actual scrapbook page takes a long time, but coming up with the ideas does not.

Until this Hopkins page.  Totally throwing me for a loop.  I had hit 'scrapper's block' (like writer's block, only for scrapbookers).

I floundered for a bit.  Moved pictures around on pages.  Decided which pictures I liked the best.  Sat and stared.

Then I decided that I should write a blog for the night.  I opened our website.  I started peeking through the posts from the end of April.  The Hopkins posts.  Long ones.  Stories of waiting.  Holding My BreathQuiet times.  And finally, when it happened... The Big One.  The one we were waiting for but wished hadn't happened.  My most viewed blog post of all time.  The one I cried through writing.

This sounds silly, but in that moment, as I tried to do Will and our time at Hopkins justice in my annual scrapbook, I was so happy that I write this blog.  Time - even short periods of time like 2 months - have ways of smoothing the wrinkles.  Little details that helped to define an event get lost in time.  But I have created this reference for our life.  True feelings and thoughts as events unfold.  It might be raw at times, but its life.  To be able to look back and open that up... its like a time capsule for me.

By reading through those old blog posts and taking some more time to process, I suddenly found my scrapping wind.  I wrote a journal for the scrapbook pages that was longer than any other I'd done (it even beat the journal that I did for Will's scrapbook page when he got his g-tube.)  Truthful, honest, and kid-friendly. 

The biggest point I made in my page... the take away message... the one I hope that someday, 20 years down the road when Will looks at this scrapbook and learns about his history is that he is such a brave boy.  He has a smile that lights up the room, even when he's in pain and uncomfortable.  He showed amazing patience being cooped up in a hospital room for 8 days, with 49 EEG leads to his head and a radius of 8 feet.  It would have drove most people crazy.  But he did it.  And he did it well. 

And now the page is done.  I'll move on to May.  But I most certainly will not forget.

Wednesday, June 27, 2012

Heating up

We watch a lot of Weather Channel in this house.  I've been addicted since I took a meteorology class in graduate school.  Will has been addicted since he could see the weather maps on the TV around the age of 2.  Luke has been addicted since Will's been addicted.  And Matt is following close behind.  Poor Nate.

Each morning as we get ready for school and work, the Weather Channel is on.  We catch the day's headlines with Al Roker and Stephanie Abrams.  And every 10 minutes during the Local on the 8s, you could cut the concentration in the room with a knife.  This is Will and Luke's favorite time of the morning.

Will recognizes the voice of the weatherman reading the weather for the next 2 days.  He stares intently as bright colors move across the map of North Carolina.  He knows the music.  He is intense when his Local on the 8s are on, and he gets MAD if you interrupt him during this time.

Luke pays attention to the actual weather predicted for each of the next 7 days.  He marvels when the weather for the day is predicted to be sunny ("That's my favorite weather, Mommy.").  He gets upset when they predict rain ("I don't like rainy days.  I like sunny days!").  He makes generally funny comments ("Wow.  That weather sounds very pleasant.").  And this morning, when the next 7 days showed highs over 100 degrees, Luke again marveled.

"Wow, Mommy.  Its gonna be REALLY HOT outside."  Then he pretended to fan himself.

He's right.  It IS going to be hot.  Too hot.  Thankfully, we're about to bust our way out of town for an epic trip to the north... leaving this blazing hot summer behind for a while.  I am seriously nervous for what the rest of the summer holds.  If we're in for a summer of highs in the 100s, this Slavik family will be spending a lot of time indoors.

So we've set up Otis' old doggie pool on the backporch to aid in this trek through desert-like conditions.  Whenever anyone needs it, they take a dip.  We've decided that because of the privateness of our backyard and the hastle of putting on bathing suits, clothing is not required in our backyard oasis pool.  Luke, Will and Matt seem to like this a lot.  I took a number of photos which I cannot post online because I'd be arrested for indecently showing you my kids and their tushes.

But I can post this photo, which Luke was all too happy to help me take.  "Really Mommy... it is OK if I SPIT??"  The photo turned out pretty awesome... now I just have to figure out a way to remind Luke that spitting really isn't ok, after snapping 20 pictures of him doing it and encouraging him to do it again and again!



If you're stuck in this heat wave for the next week, I highly recommend a backyard kiddie pool.  Spitting and clothing optional.

Monday, June 25, 2012

Tools of the fight


Every day of the week, Will takes no fewer than 7 medications. Two are for his g-tube, one is for hypertension, one for muscle contractions, and three are for seizures. Putting together tubes of medications, crushing pills, emptying capsules onto applesauce and filling g-tube extension sets... it has become a part of both our morning and afternoon routines. Both Nate and I have our ways of ensuring that in both the early morning hours, and the crazy nights before bed that Will gets all the medications that he needs.

These are our tools of the trade. Our tools in the fight against effects of his cerebral palsy.

When Will first got home from the NICU, he only took the medication for hypertension. His brain hemorrhages damaged the portion of his brain that control blood pressure, so the medication kept his blood pressure in a normal range.

Then Will got the g-tube, and we added two more meds. Then he started having seizures, and we've been through several medications to combat that. Finally, we added the baclofen to stop the muscle contractions that were keeping him up at night.

By now, it is normal for us... but I know that Will takes more drugs than your average 80 year old. I can tell by people's googly eyes when we visit that Will's cooler bag of medication is more than they were expecting. To write down his list of medications to a babysitter handling bed time is a dose of reality. Its a lot of drugs to keep track of. Keeping up with the prescriptions and the doctors and the refills and the drug coverage is practically a full time job.

As I said a couple of days ago, Will has been averaging about 2 seizures per week for the past 2 months. Every third night. Tonight was supposed to be that night.

Will wouldn't go to sleep. He was rolling around in bed, laughing and carrying on as Luke slept. The thunder rolled, and for an hour Will did not go to sleep. At one point it got silent and I went in to check. Will's eyes were open. I thought for sure the suspected seizure was upon us.

I grabbed him quietly from bed and brought him to the kitchen for Nate to look. At that moment, Will smiled a full-faced grin. There was no seizure. He was just excited to be awake.

So he hung out with us on the couch as we caught up on DVR'd episodes of Food Network Star. He was silly for a while, and then seemed to get annoyed. We thought he wanted to go to sleep, but he kept indicating that he wanted to stay with us.

At some point we noticed that Will's eyes kept drifting to the left, and his head would stay to the left. We tried to gently straighten it, but he kept holding his head to the left. Then he would just stop and smile and look at us. Then the eyes and head would hold to the left.

It was like he was starting to have little inklings of a seizure, and would pull himself out of it. This happened repeatedly. Just at the moment we would get concerned, he would stop and smile and interact.

This went on for about 10 minutes. We'd never seen anything like it before, but we also don't regularly watch Will fall asleep to know if this was really out of the ordinary. The act of falling asleep usually takes Will an hour - we just haven't stood in his room and watched him for that long. Maybe in the hour that we hear Will making noise and a mess of his sheets and pillows, he's fighting the seizures that he feels coming. Maybe he gets the auras that people with seizures talk about... and maybe he just can't tell us.

After Will finally gave it up and went to sleep on Nate's chest, we talked about what had just happened. We watched intently to see if he would start to seize like we were used to seeing. As he slept soundly, we got teary eyes talking about the quiet fight we had just witnessed. He clearly didn't want to let the seizure take over. Will is such a strong little boy.

I guess it goes to show you that you don't need a prescription for a bottle of gumption.

Sunday, June 24, 2012

... because saying 'no' all the time is no fun at all

... and jumping on a bed with your brother is both fun and muscle-building at the same time.








Wednesday, June 20, 2012

Shortening the night...

... because I already don't sleep enough...

Since the month of no seizures post-Hopkins, Will has been averaging two seizures per week.  We have added the Vimpat, but because of potential dangerous allergic reactions, we have to bring up the dosage very slowly.  It takes about a month to get to full recommended dosage.  We aren't halfway there yet.  My fingers are crossed that the Vimpat works like it has for other people with similar seizures to Will.

But for now, it doesn't feel like we're doing enough.  I know from a logical perspective, we are doing all that we can.  It is just very slow.  And our chances of finding the magical drug combination and dosage is so very slim.  Some days it is hard to stay positive.

We remain vigilant in checking on Will after he goes to bed.  Thankfully his seizures remain pretty typical on that front - always occurring at bed time.  Because of this vigilance, his seizure duration is short.  The emergency medicine works quickly, and he's back to bed in less than 5 minutes.  Because we catch the seizures early, the effects on Will are much less than when he's been seizing for several minutes before we've found him.

On the nights when he has a seizure, I get upset.  It is distressing to witness.  It doesn't get easier after hundreds of witnessed seizures.  I just get this overwhelming sense of dread over me.  And despite my emotional tiredness, it is on the nights of seizures that I stay awake late.  So late.  Keeping watch.  Taking note.  Shortening the night. 

I guess from an illogical perspective, I think that the longer I am awake, the lower the chances that I would miss another seizure.  I am so honestly and brutally afraid that there will be a time that we do not catch an odd ball seizure in the middle of the night. 

When I stay up this late, I hear the noises that I miss when I go to sleep at a normal hour.  Otis' dreaming snorts.  Matt hitting his head against the wooden side rails of his bed.  Luke talking in his sleep.  Will straining against his weakness to shift position in bed. 

I pass the time by catching up on my scrapbooking.  With the holidays in 2011 and the Hopkins hospitalization two months ago, I got very behind on my scrapping.  Like 7 months behind, my largest deficit ever.  Here it was April and I still hadn't scrapped Halloween.  Since we've returned from the hospital, I've caught up quite a bit... most of that during late nights such as tonight.  Though it is bad because it is indicative of how many nights I've stayed awake on seizure vigil, I have caught up now to the beginning of April 2012. 

I'm tired.  Its late.  Tomorrow we step up another 1 mL on the Vimpat.  Keep your fingers crossed.  We need something to work.  Something has got to stop this increasing seizure activity.

Tuesday, June 19, 2012

Cool in the pool


Seriously.  Could Will be any happier to be in the pool? Never mind Luke's death grip and mopey face strangling Nate from the back (he was cold). Just look at that little kid in the front. And that big kid in the middle.

All smiles. There's something special about the pool for Will. I've talked with other moms of kids with quadriplegic spastic cerebral palsy, and they all echo the same sentiment.

The pool is a magical place. Its where movement is easy and fun, where you don't have to work so hard to hold up your head, and where legs are buoyant rather than weights holding you down. 

And not to steal a line from Chuck E. Cheese, but the pool is a great place for a kid to be a kid.  Just a kid.  Not a kid with special needs.  Not a kid in a wheelchair.  Not a kid who can't do the fun things his brothers can do.  Not a kid you feel sorry for.

Because honestly, if you were at the pool and you saw this face on Will, how could you feel anything but elation?

Monday, June 18, 2012

Going back to Eno...

For some reason, we haven't really been hiking this year.  The last time we actually hit a trail was back in February when we went to Hungry Mother State Park in Virginia (read about that trip here).  We brought out a backpack for Will when we went to Atlantic Beach, but aside from that, they backpacks have lived a lonely 2012. 

We had beautiful weather in North Carolina this past weekend.  With morning lows near 60 degrees, the trails were calling us.  And with Father's Day already a little packed with Nate's regular lacrosse game and a planned movie date with Luke and Nate, it seemed like a good day just to get out as a family. 

Lucky for us, Opa was in town for the weekend too.  So we picked him up on our way towards Eno River State Park - our favorite of all the NC State Parks within an hour of us.  We missed you Oma!

And lucky for Luke... three adults and three backpacks means he gets a ride sometimes :)

So we hit the trail over the wobbly wire bridge... I really dislike that bridge.  But there is a beautiful view of the Eno River, and it gets us to some good trails.  So with Matt firmly in my arms, Will in a backpack, and Luke walking with steady steps ahead of Nate, we made our way across my biggest fear.  And I'll be damned if Otis didn't lose his balance as the bridge shook, and end up on his butt.  Ugh.  My heart was in my chest.  Couldn't get across the bridge fast enough!

Thankfully we made it across safely.  And we spent the next couple of hours exploring the wilderness cabin, singing songs, hiking, and having snacks on a rocky outcropping near a bend in the river.  Just long enough to get out of the house, enjoy the beautiful June morning, celebrate an early Father's Day, and spend some good time together.  And just short enough that nobody got too cranky, fell asleep in a pack, or got too tired and lost their balance (or worse!) on the way back across the bridge.







We did run into some dangerous wild animals during our trip, sunning themselves on the rocks.  In the case that you're headed to Eno any time in the near future, be forewarned!


Sunday, June 17, 2012

Graduation Day

Will and Luke turned 5 in March, and we're in the early depths of summer in the South... which means, it is time for pre-K graduation!  Kindergarten is right around the corner.  This is hard for me to believe, as my kindergarten memories of Ms. Manning at Center School in Greenbelt don't seem like they were all that long ago.

However a lot has changed in the world since I started kindergarten in 1984... one of which is the elaborate graduation ceremonies that are thrown when kids move from pre-K to kindergarten!

Last Thursday was Luke's graduation from his daycare pre-K.  We love the school and he has learned a lot since starting there last year.  I had a hunch that we were in for a special graduation ceremony when Lifetouch came in and took 'cap and gown' photos with the rising kindergartners.  Very cute to moms everywhere, but probably ridiculous to everyone else!

Well the graduation ceremony did not disappoint.  We arrived early with kids in their summer Sunday best.  Luke was ushered off to get into his cap and gown, and we were ushered into a large auditorium.  I snuck off to snap some 'getting ready' photos before I was shushed away.  I guess I was distracting the kids from their pre-game rehearsal.



I was shocked by how a thin gauzy white gown and cap could make my eyes immediately tear over with the disbelief that Luke is 5 years old! What a milestone! And then my mind jumped to 13 years from now when he'll be wearing a similar outfit and walking across a similar stage as he graduates from high school. I had to stop myself there.

I returned to my seat just in time for Pomp and Circumstance to start over the loud speakers.   I was taken back to the Cap Center in Prince George's County, Maryland where I graduated from high school.  I started swaying in my seat, remembering the long walk from the Washington Capitals locker rooms to my seat on the floor, stepping to the music in time. 

Only these weren't 18 year old high school graduates filing to their seats before my eyes... they were 4 ft tall (and less!).  And waving to their parents like their life depended on it.  With big smiles, wide eyes, and lots of excitement. 


There were less than 30 kids graduating, so they filed in a whole lot faster than my class of 900!   We were lucky that they didn't walk in by last name - Luke was sitting in the middle of the front row!  They quickly took their seats and the program began. Welcoming remarks, obligatory thanking of teachers and administrators, etc.

Then the entertainment. Two songs and dances. The kids did great.  Luke had so much fun, laughing and dancing in front of everyone in the audience. He didn't seem at all freaked out to be on stage!

I don't know if any of the kids remembered all the words or moves despite the strategically placed teachers all around the room.  But that didn't seem to matter in the eyes of us doting fans in the audience. Through teary eyes and smiles, we gave the kids a standing ovation after their number.


With fined tuned subtle yet persuasive preschool teacher precision, we moved from song and dance to the announcement of the candidates of graduation.  Cue cameras.  Wait patiently for your kid's name to be called.  Snap a ton of photos and hope just one comes out.  Or maybe two.



And then, in an instant, they were marching off stage again with graduation certificates in hand. The announcer mentioned cake in the lobby. We tried to take some family photos outside of the auditorium. All Luke could think about was the promised cake.




Shortly after this last photo was taken, Luke had to take off his cap and gown. They belong to the school, so we (thankfully) did not have to buy one. But Luke had grown attached to his cap and gown, and giving it up didn't seem like something he wanted to do. Also, he had slept terribly the night before and we were pushing bed time...

So we were soon in full on emotional meltdown. Luke was sobbing. His teachers looked shocked because he's never thrown a temper tantrum in school! And this was one for the record books. I shoved a piece of cake in Matt's mouth as we ran through the lobby with a screaming, crying Luke. We drove home to the beautiful sounds of Luke calling us bad parents. We got him ready for bed to threats that he was going to take Matt and Will with him to Carolina Ale House to celebrate his graduation and leave us at home to think about our actions.

And then in an instant, he was asleep. And the excitement of graduation day ended with a collective Slavik sigh of relief. Let's hope kindergarten graduation isn't quite as dramatic next year.

Wednesday, June 13, 2012

Eiffel Tower

Luke suddenly has an affinity for blocks.  I know... seems odd right?  Just over 2 years ago, I wrote about Luke's initial pre-K evaluation his extreme dislike for blocks here.  The fact that Luke wouldn't play with blocks at the age of 3 bothered his evaluators so much at that time that they wrote block playing goals into his IEP.

Well I am here to tell you that children do actually meet their IEP goals sometimes.  In the past two years, Luke has grown not just to like, but to love blocks.  Thanks Ms. Michelle!

Whenever given the opportunity, Luke will pull out our colorful set of wooden building blocks and go to town.  Typically he builds walls or garages for his Matchbox cars.  A couple of days ago, he pulled out a new one:

Mommy, I want to build the Eiffel Tower.

Sorry?  Like the one in Paris?  How on Earth does my 5 year old know what the Eiffel Tower is?  Clearly he learns things other than block play in school, because I've certainly not muttered the words "Eiffel Tower" in Luke's presence... and I certainly haven't shown him pictures to model his block tower after.

But off he went, stacking blocks as high as he could.  He added arches, attempted girders, and on version 2.0, he even added a spire.



That is, of course, until Matthew (aka King Kong) entered the room and decided to smash Luke's Eiffel Tower versions 2.0, 3.0, 4.0... you get the picture.  After getting upset for a couple of times at the shattered remains of la tour Eiffel, Luke got smart and asked Matthew for his help building.

Come on, Matt, let's build the Eiffel Tower.  You build the outside and I'll build the elevator for Will.


I am constantly amazed by Luke's heart.  He's got thoughtfulness and character beyond his years.  Sure he drives me crazy sometimes and this magic only lasted for a moment until King Kong came to his senses and started knocking down the Tower that Love Built... but at the end of the day, those aren't the moments we cherish.  Or snap pictures of.

Monday, June 11, 2012

Those who should not teach

I'm sure you've heard the old adage that "those who can't do, teach."  Well I learned a long time ago that when it comes to me and swimming, the opposite holds true.  In my world, "those who can do might not be cut out for teaching."

I swam competitively for much of my young life.  When I reached my middle teen years, there was an expectation that I would either teach swimming lessons or coach a group of younger swimmers on my team.  Unlike my peers who thrived while teaching, I didn't have any desire to do it.  I didn't have a lot of patience with young kids.  And I couldn't explain how to swim... it was just something I knew how to do.

I finally gave in and agreed to help a good friend of mine coach a group of 8 year olds on our swim team.  I felt so much pressure to teach these kids something.  I thought if nothing else, I should be able to teach them how to dive.

It seemed simple to me... show them what to do a couple of times, and then BAM!  They would be master divers.  Only it didn't really work out that way.  For the next couple of minutes, I watched bellyflop after painful bellyflop.  Those kids looked up so expectantly and excitedly, they wanted encouragement.  And all I could think to do was show them again how I dove. 

There was one young girl who seemed really interested in diving, but just wouldn't leave her feet.  To my young illogical mind, the best thing to do appeared to be to get her off of her feet.  Somehow I convinced her to let me take her by her ankles and hold her headfirst over the water.  I had her put her arms above her head, and I dropped her in.

A perfect dive.  And clearly not a shining star on my path to good and mature judgment.

She scrambled out of the water, and told me very pointedly "NEVER DO THAT AGAIN."  And her point was taken.  I wasn't cut out for coaching, and I never attempted it again. 

When Nate and I had children, I knew that I would not be a good swimming instructor.  I knew from the moment that they were born that I would not be the one to show them how to doggy paddle or dead man's float or dive.  And you know what, I am fine with it.  It is probably in all of our best interests!

We joined a pool this year, and it was important to me that Luke start swimming lessons.  Though he goes with us to the pool and has a great time splashing around, I think there are some important skills to be learned in formal lessons. 

Additionally, I am always thinking about fun things that Luke can do to build some strength and control in his legs and feet.  He still wears orthotics and walks with a limp.  He is coming to an age where he is becoming aware that his friends do not do either.  He told me the other day that we need to "go out and buy [him] some fast shoes" so he can keep up on the playground.  I felt so bad.  I really want Luke to find confidence and to feel proud of himself.  From my perspective, being buoyant in the water kind of levels the playing field with some of his more swift and agile land-loving buddies. 

Sounds like a muscle-building, control-gaining, fun-having, confidence-building, friend-making, float away kind of good time, doesn't it?

Tonight was Luke's first lesson.  There are only 3 kids in his class with one instructor, so he got some good one on one time.  He was so excited to show off that he could already jump in to the water and push off of the bottom (ok so maybe I am alright to teach him a thing or two).


They worked on floating and kicking and even a little diving off the side.  Not my kind of diving though.  Safe, from your knees kind of diving.  The goal of the class is to teach water comfort more than anything else, and later on they will move into some basic doggy paddle and floating techniques.  Luke has never been comfortable laying on his back in the water (even in the bathtub), so I was happy to see that the instructor already started working on that with him.



Luke did really great!  I was so proud of him.  And truly happy to be sitting on the side and taking pictures.  And seeing him smile his proud "look at me!" smile. It made my heart feel so good.

Thursday, June 7, 2012

Vimpat

I took Will to the neurologist today.  He has had 4 seizures in less than 2 weeks.  This is a lot for him.  Though they all happen around sleep time, they have not all occurred as Will is transitioning from being awake to going to sleep.  Two of them occurred upon waking, just like the seizure he had at Johns Hopkins.  Clearly these medications are not working, and the month of being seizure-free after we left the EMU was a fluke.

What I am learning as I deal with more neurologists is that neurology is completely inaccurate.  Two people might be the exact same age and size and have the exact same seizure type, but the same drugs don't work on both of them.  The most important tool a neurologist has is a list of drugs that work on your type of seizure, and a method for selecting the next drug to try.  Then its just a matter of time to see if the drug is effective.

This inaccuracy used to frustrate me, because I wanted the doctor to tell me which drug would stop Will's seizures.  Now that I know what I know, with a little neuro drug research and comprehension of my own, I am an active member of the "next step" decision-making team.  The neurology resident in the room with us today actually thought I worked in the medical field.

When I explained to Will's neurologist about his increased seizure activity, he agreed immediately that we needed to make some changes.  He started writing a list of epilepsy medicines on a pad of paper.  Unlike previous meetings when the list has been 10 drugs long, today's list of "next drugs to try" was just 4 long.  Will is already taking Carbatrol and Lamictal - and it is not safe to just stop one of those drugs to give him another.  We need to wean him off of one of the drugs slowly, so whatever drug we added today could not have any negative interactions with these drugs.

We started going through the list of 4 drugs.  Depakote, phenobarbital, Felbatol and Vimpat.  So many drug names to remember, it is dizzying at times.

Though a good drug, we had to rule out Depakote.  One of the side effects of Depakote is increased appetite and almost every kid that gets put on it gains weight.  If you know Will's weight history, this would seem like a good thing, right?  Ha.  Here's the ironic part.  Will's CP doctor told me the other day that Will is on the verge of being too heavy.

Sorry, please repeat that?  I must have misheard you.  TOO HEAVY?  According to the doctor, the ideal weight and height for children with limited mobility is somewhere in the 10th percentile.  They picked this number because the child is still healthy, but lighter and easier for a caregiver to lift and maneuver.  I can't decide if I have a moral problem with this.  I get it from a logical perspective, but how on Earth are you going to have an effect on your child's height??

Before I digress any further, we ruled Depakote out because we didn't want to make Will any heavier.

Phenobarbital is a very old drug.  It was released for seizure control in 1917!  The doctors still have no idea how it controls seizures, they just know that it works.   While we were talking about phenobarbital, I told the doctor that I thought it might be a good idea to pick a third drug that acts on the body in a different way than the 2 drugs he is on (those drugs aren't working, maybe Will needs a drug that acts differently on the body).  He agreed.  And then we knocked phenobarbital off the list because of what they do know of the drug, they know it acts in a very similar way to the Carbatrol.

Then we got to Felbatol.  Will's neurologist told me that this drug is probably the most effective drug on the market at controlling the broadest range of seizures.  I had to ask the dumb question: so... um... why haven't we tried it then?

Well, because of the side effects.  Within the first year of the drug coming on the market, people who were taking the drug started to develop permanent bone marrow and liver problems.  4 children died.  Over the next couple of years, each of these instances of damage and death was determined to be caused by something other than the Felbatol.  But the damage had been done.  The drug is still used today, but to put people's minds at ease, you are required to get blood and liver function tests on a weekly basis for the first couple of months, then you move to one a month for the first year.

And you have to sign a "yes, I know this drug might kill me" waiver before the pharmacy will release it to you.

Umm... I am a logical person and all, but umm... NO THANK YOU.  This is my 5 year old son we're talking about.  Maybe if it was the last possible drug on the list and we had explored every single other possible option, I might... MIGHT consider it.

So that left us with Vimpat.  The drug that Johns Hopkins indicated they were starting to see very positive pediatric partial onset seizure results from.  It was approved by the FDA is 2007, so there is just about 5 years of side effect data on it.  It isn't the most popular drug because of this... however the side effects that are noted are minor and comparable with some of the other drugs that Will is taking.  And it acts in a completely different manner than Carbatrol or Lamactil.

Vimpat it is.  This is, apparently, the manner in which most neurological drug and treatment decisions are made. Cross your fingers that Will tolerates it and it starts to control his seizures!!

We pick up the Vimpat from the pharmacy tomorrow. I brought up the fact that we needed a new Diastat prescription. I relayed the whole story from yesterday, and about how the current prescription is written in a way that limits the amount and frequency of Diastat we can get to stop Will's seizures.

"Well I can fix that," said Will's neurologist said with a smirk.  "How obnoxious do you want me to be in this new prescription?  One plunger per day?"  For your mental picture, this is a 60 year old man who insists on wearing bowties, speaks in a very low voice, and has (by all accounts) never exhibited a sense of humor before today.

Awesome.  And while we agreed that one plunger of Diastat per day could be considered by some to be a BIT of overkill, he wrote a prescription for enough Diastat that we won't ever be in yesterday's position again.  Ever.

Wednesday, June 6, 2012

On asinine rules

I am an appreciator of rules.  I respect authority.  I've never done drugs.  I didn't sneak vodka into movie theaters in high school.  I refused to skip school, smoke cigarettes or stay out past my curfew.  Perhaps that makes me boring.  You won't find a person in the world who calls me a rebel.   Before the age of 10, I was getting mad at my parents for driving down random roads and driveways to "have an adventure" because there was a prominently posted "no trespassing" sign at the entrance from the road.

That's just me.

As I've aged, I've started to question more of the rules.  My current stance is that if a rule has a logical reason behind it, I am probably good with it.  But if the guidelines don't make any sense, this mama's probably going to push on it.  That's what mamas do.  We don't take crap, and we don't accept asinine rules.

Earlier this evening, Nate went to pick up Will's prescription for his emergency seizure medication, Diastat.  Unfortunately Will has had a couple of seizures since my last post, and we have to use the Diastat to stop them.  Each dosage is a plunger filled with medicine, and they come pre-packaged from the manufacturer in dosages of two.  We filled the last Diastat refill in the 4th week of May. We were in need of another refill.

When Nate went to get the medicine, the pharmacy told him it could not be refilled because it had not been 20 days since we filled it last.  That is what the prescription was written for.  Though they wanted to help us, they said their hands were tied by the insurance company.  Nate was beside himself and had two kids in the car, so opted to drive away, calm down, and call them later.

I called our insurance company while stuck in traffic on the way home.  I know that if it had been me at the pharmacy, I also would have gotten emotional and upset.  In the absence of Diastat at home, we either have to call 911 for help or take Will to the emergency room ourselves.  The idea and memories of past such situations can quickly come back and cause me and Nate to get emotional about having the Diastat on hand... but I was feeling pretty calm when I dialed.

The woman on the other end sounded kind.  She listened to the story and I could hear her clicking away on the computer.  She reiterated that the prescription could not be filled again until June 10th.

I explained Will's seizures.  I explained that the Diastat was an emergency medication to end a seizure, much like an Epi-Pen is to someone with allergies.  I explained that his seizures did not occur on a schedule, and that while I appreciated that the prescription was written for filling once every 20 days, I needed them to override the date restriction and approve the pharmacy to fill the order.

She tried to tell me that if I could get a new prescription to get it filled sooner, they would honor that.  Mind you, it was 6pm.  I was not going to get a new prescription.  She sent an approval request for an override and was denied immediately.

Then she told me there was nothing she could do to help.  There were rules about this kind of thing.

Asinine rules.  Rules that don't make any sense, that lack logic and put lives at risk.  What kind of sense does that make?  No, you can't have this medication because of semantics... so good luck tonight.  Hope he doesn't seize.

I refused to accept that answer.  Without raising my voice or showing emotion, I started again.  I used a technique I learned several years ago from a co-worker.  I gave her the same exact information about Will, his seizures, the Diastat, the risks of them not filling it.  I did not change my story or my tone.

She tried to push through another override and was again denied.  "I don't know what to tell you," she said.  "There is nothing I can do."

We called my co-worker's technique "the rule of three," because he would go through his soliloquy three times.  Each time he said the same words, used the same inflection, and changed nothing.  After the third time, he had worn his opponent down enough that they gave in.  It worked like a charm.

So I launched into my story for the third time.  When I was done, she was silent.  I asked if she was waiting for me to say more, and she told me that she was waiting for another override approval.  It was denied.  "There is nothing anyone can do to help you.  There is just no way to do it. You have to get a new prescription or wait to fill the medication on June 10."

I was quiet for a moment.  Still non-emotional and even-toned, I told her there's always a way to do it.  There are always around the rules, especially when they don't have the best interest of your child at heart.  And that who ever she was talking to about my override probably COULD help me, but just didn't want to.

She asked if she could transfer me to her manager.  I didn't ask for it.  I didn't demand it, either.  But I accepted happily and thanked her for her help. 

Within minutes, a less than cheery sounding manager joined the line.  "So Mrs. Slavik," she started.  "I understand you are giving your son more than the prescribed dose of his medication."

Ugh, at this moment, my blood started to boil.  I had been at this now for 30 minutes.  Traffic was starting to move.  I started to doubt the rule of three.  Maybe the only way to bend the rules away from their asininity was to scream and yell and cry?  I've tried that method before too. And felt like a complete ass afterwards.

I took a deep breath.  Perhaps my method will be called "the rule of four and a deep breath."

I explained Will's seizures. I explained that the Diastat was an emergency medication to end a seizure, much like an Epi-Pen is to someone with allergies. I explained that his seizures did not occur on a schedule, and that while I appreciated that the prescription was written for filling once every 20 days, I needed them to override the date restriction and approve the pharmacy to fill the order.

And she agreed.  She processed the override. 

Not without adding "I am going to do this just this one time, Mrs. Slavik.  You really need to get this prescription written for the amount of the medicine that your son needs."

For a second, I couldn't find my tongue to bite it.  I started to tell her that I would be happy to have the prescription written so we could get one plunger of Diastat each day.  At $200 a shot, I am sure they would be happy to fill that.

But thankfully I stopped myself at that moment.  I thanked her for deciding to help my son.  And within 20 minutes, I was walking in the door with the 2 plungers of emergency Diastat, feeling pretty proud of myself.  I am happy that I have matured to a point that I question rules now, understand enough about them to question the asinine ones, and am strong enough to push for what Will needs.

I usually get emotional and frustrated by these events.  Sometimes they make me feel beaten down.  I never stop, but I certainly stumble.  Weakness is not a trait of a good advocate.  But with this Diastat win, I finally felt like a confident, assured advocate for Will.  

Tuesday, June 5, 2012

Wordy Matt

Matt has been surprising us pretty regularly with his understanding of words, and awareness of the world around him.  He loves to sing songs (and mostly knows the words).  His favorite song is ABCs, which Papa Joe can attest to - having sung it more than 20 times during a 30 minute car ride about a month ago.

video

Since I took this video, Matt has started stringing words together into sentences that actually make sense.  Nate and I just look at each other and crack up.  He's barely 2 years old!  Here are some examples of his funniest Matt-isms.

Me: Matt, where's your nana (blanket)?
Matt: Its gone!
Me: You better find it.  It is bed time.
Matt: Nana... where are you? (looking around)
Me: Did you find it?
Matt: Oh no!  Mommy!  My nana is on the floor!

Me: Matt, would you like milk or water with dinner?
Matt: Umm... I want... juice!
Me: No buddy, we don't have juice with dinner.  How about milk?
Matt: Umm... how about juice!  I want juice.

Me: Matt, please go sit down for lunch.
Matt: No!
Me: You need to go sit in your chair.
Matt: No I don't.

Me: Has anyone seen Otis?
Matt: He's outside going potty.

Me: Buddy, do you want a drink of water before bed?
Matt: Yes please (takes cup and drinks it down quickly)
Matt: Phew!  I was thirsty, Mommy.

And our all time favorite, typically at bed time...
Matt: I love Mommy!  I love Daddy!  I love Luke!  I love Will!  I love OT!  Kiss!  Hug! Night night!

Monday, June 4, 2012

Things you remember

After my parents announced that they were divorcing, I can remember my grandmother telling me that she wasn't entirely surprised.  While she was upset about the news, the one thing I remember her telling me is that my parents "never did anything together.  They were always going in two different directions."

It is funny what affects you.  Random comments that might not have meant too much to the person who spoke them suddenly have a profound effect on your own future.

I'd by lying if I said those words didn't stick with me.  Perhaps I take it too far sometimes.  I want to be the opposite of not doing anything together.  I want our family to do a lot together.  I plan things all the time - things that I hope we all have fun doing.  I want my sons to grow up with positive memories of doing things together as a family.

Last weekend, we went to the zoo.  I thought they'd love it.  But the day was a little hot even in the morning, and the zoo is by a river so the air is muggy.  Will was tolerant.  Matt didn't care about the animals - he was more interested in running away (which meant I had to give chase).  And Luke... the one who I thought would be most excited by seeing lions and elephants and giraffes... had this look on his face the entire time:


It would appear that I had planned too much.  They were telling me that they'd had enough.  And I can take a hint.  My slightly unnatural compulsion to have us on the go is no match for three tantruming kids.

So this past weekend, we stuck close to home.  Instead of our earlier plans to put Luke in taekwondo and Will in hippotherapy, we decided that our family was better suited for a pool membership.  Together, but low key.  It put us all on the same course instead of pulling us in several different directions.  We went to the pool twice this past weekend, not worrying how long we stayed or who just wanted to sit on the deck. 

It was awesome.  And look whose got a new attitude: