Brains Are Equally As Important As Boobs

*cough*  Um, hey there!

This space has been pretty dead for a lot of reasons, the main one being that we are just in the middle of surviving.  It is hard work.  Don't feel neglected though, you're not the only one!   I've been neglecting my hair, my church callings, friends, Fall baking (and we all know how important that is to me) and a host of other stuff....it's a group thing! ;)

I decided to clear the cobwebs and dust the old blog off though for something important.  It might take me three hours to write this post, since Cole is in his cycle and I can only write when he is resting in between seizures, but here it goes.

It can really bother me when I have people come up and tell me how glad they are that Cole is doing so great.  Huh?  What are you talking about?  Sometimes I just nod my head and say, "Yeah, it is great".  No one really wants to know that we have been to hell and back multiple times this year.  It's possibly my worst year ever; but, kind of like the tech who did my MRI yesterday said, "But you look like the picture of health!"  Yet here I am for yet another test! ;)  We need to work on our sick face, I guess.

It is obvious that these particular people only get their information from the snippets of this and that on Facebook.  Just because we haven't been in the hospital, doesn't mean things are going great.  It is because the hospital told us that they really can't help Cole any more.  That is our reality.  We just have our mobile Emergency Room here at the house with our team and equipment spread everywhere.  We batten down the hatches and hunker down whenever the bad days hit.  We have been occasionally having really good days, and we celebrate that, but the bad days would make even seasoned veterans shake in their boots.  Even we like talking about the good days more than the bad ones.  Not a lot of people can relate to having to watch their child shake and turn blue multiple times, among other things.  I'm glad for them, but it makes conversation difficult for some when they can't immediately find something in common.  It's uncomfortable.  So they just get what they can from those bits of social media and call it good.  Hey, we like to talk about the weather too!

Turns out, taking pictures of seizing children is really hard, who knew?

Now I love social media, especially Instagram.  It lets me see pictures of my nieces and nephews or friends that we live so far from, that is seems like a world away.  It is a way that my grandparents can see pictures of Cole, even though they have not seen him in person in 4 years.  It is also just a way for some people to stalk others and believe that they have the whole truth and nothing but the truth.  No matter how many "keeping it real" posts you do, no picture or status can explain everything about someone inside and out.  Nothing can compete with a sincere, genuine interest in someones life and that's what real friends are for, not just online acquaintances.  There is a place for both, but just because you follow someone on social media does not mean that you really know them.  I have actually had someone tell me to my face that, "The entire universe knows when Cole has a seizure.  It is all over the Internet!"  Wow.  Just.  Wow.  I was so shocked that I even came home and went through all of my posts of any kind.  I was questioning myself and wondered if it was really TMI as this person had been describing.  Not even 1/16th of anything that really happens to Cole makes it to "The Internet".  I didn't mention it once, during 346 convulsive seizures last month.  We consciously choose happiness, and choose to focus on the good.  Sometimes that is hard work, but we function better that way.  Being depressed can also be hard work.  Just because you don't see graphic posts doesn't mean that it is sunshine and rainbows around here.  I don't mean to be a downer, but this person obviously didn't choose to get to know us intimately and did not understand our day to day life.  That's okay!  Just don't make assumptions.  I don't assume that you are self absorbed if you post a picture of yourself, or if there are more than two posts in a day.  Or if everything looks perfect, then you must be deluding yourself that you are perfect.  Or if you go and have fun without me that we are no longer friends in real life.  Who makes up these secret rules anyway?  Maybe that is why I have really backed off on most social media.  It is a platform to automatically judge something or someone, with a picture or a sentence,  and I don't like that.  I'm going to keep my feed full of things that are important to me, because it is MY feed!  You should do the same.  I'm not going to stop being on Facebook, because that is where I connect with other Dravet and 4 Paws for Ability parents.  I get good information there, amongst the garbage.  I am just not sure when being real friends was replaced with pushing a like button.

No one wants to come up to me and automatically be my friend if they saw a picture of me floating around where I was covered in drool, holding a child that looked like he had been beaten up.  Most likely they would want to stay away, or call authorities.  I get that.  It's a side that I don't particularly like either, but it is real.  Most would prefer this.  Don't we look cute?

Take yesterday for instance.  Cole fell forward and hit his head on the wall as he started to have a seizure, even though I was right there and caught him.  I just happened to catch the bottom half as he went down.  Those red marks on his noggin are not blood, this time.  That's not just casual conversation that you can bring up anywhere.  It would make the majority of people feel unsettled if I came up and started describing the details of our day to day life.  So how much is too much information?  Where is the line between advocacy and emotional vomit?  I have seen some other parents just share too much, even for me-who tends to be an over sharer, according to some.

Now, why all the hype?  November is Epilepsy Awareness Month.  Did you know that?  Are there people in your feed that are bringing awareness? Or is it just too much information?  How many people talked about Breast Cancer in October?  Wore pink?  Even professional sports teams, talk shows, the radio, bakeries, etc. participated-the promotion was every where.  Look, I am all for boobs...I have them, even if they are slight; and I have nothing against Breast Cancer.  In fact, I have someone that I care about who is fighting it right now.  It is a horrible, horrible thing to go through.  I just want to bring light to the fact that it is somehow easier to talk about boobs than brains.  Are people more comfortable with it because they know so many other people with breasts?

That doesn't make sense really, because there are more people will brains than breasts.  All people have brains, whether we tease about it or not.  No one on the Wizard of Oz was wishing that they had a great rack!  Some are more willing to talk about mastectomy's than the fact that my child will never have a chance a remission.  He doesn't have the options like chemotherapy or radiation.  He will have Dravet Syndrome forever.  He will never be a "survivor" in that sense where he is "free" from his illness.  It deserves just as much advocacy or more.  A body can live without boobs, but not without a brain.  Did you know that there are more deaths per year from Epilepsy than Breast Cancer?  More.  Foundations like this one have my respect but they are few.  We are lucky that we can have this roller coaster we are on remind us that the downs can make you feel like you are going to puke, but the ups are thrilling.  We try to focus on the ups.  If you are our friend in real life, via the Internet or even just an acquaintance who happened to stop by our site, maybe you could take a couple of moments this month and educate yourself a little about seizures, know as much about them that you do about Breast Cancer.  If talking about brains or seizures makes you feel unsettled, just look at a couple of websites, like CURE or Dravet Syndrome Foundation or American Epilepsy Society.  Or you can think about Cole.  It is easy, because he is pretty cute.  We are going to continue to be advocates, even if makes others feel uncomfortable.  It is important, to us.  In our world, it is not too much information.  It is the reason we started this blog.  To educate others and provide support.  I'm not promising that I will be writing frequently, but enough people came up to me at the Dravet conference and mentioned my blog that I know it is helping someone, some where.  Here is to hoping that we all can have more days like this one.  Outside, walking, talking, eating by mouth.  Things that we can easily take for granted, but for Cole they are a victory.

It Is Getting Closer!

The anticipation is building for our Make A Wish trip!

The wish granters threw Cole a little party to help him get excited.  We invited a few people that have helped him along the way.  His teacher, therapists, doctor and some other important people came.  We had such a good time.

 They brought balloons, Cole's favorite!  The others knew him so well that a lot of them brought bubbles.  Cole thinks that if we are having a party, it must be his birthday.  So they obliged and brought him presents!  We are so lucky to have these special people in our life.

 The weather was just right and we got to be outside for a little bit.  Cole had a wonderful day.  We totally paid for it that night with 3 big seizures, but the party was great.

Cole really doesn't understand anticipation.  He is very much in the moment and black or white.  I have been talking non-stop about our trip to him and he is just in the frame of mind where he thinks, "Well why aren't we there already?"  He does not understand that we are going for him.  That he will get special treatment.  He thinks he rules the world anyway! ;)  He will parrot back when I ask "Where are we going on an airplane?"  "TO SEE MICKEY MOUSE!"

It seems like I can't find pictures of Slugger and his sister.  They are too funny when they are together.  It is like Wrestle Mania and they totally forget that they are service dogs.  We are so lucky to live close.

My friend helped me make this adorable bunting banner with her awesome Silhouette Cameo.  That thing is amazing!  My house is so dark you can't see it very well, but the font is the perfect iconic Disney lettering.  So much fun!  I am actually glad that I don't have a craft budget.  I think if I had this machine, it could be a real time consumer.  I would just think of parties to have so I could create projects! ;)

Cole loves to paint so he helped me make this Mickey head topiary.  It has glitter on it, cause the boy loves him some glitter!  I can't help it.  I do too!  The red paper on the banner is glitter paper.  We like things that are sparkly.

We are so excited to make Cole's dreams come true.  He has been on a super high dose of steroids to help him out while we are in Florida.  So far, there has not been a big change.  We are hoping that the timing is just right and he gets a break while we are there.  Here's to hoping!  Maybe the steroids will act just like the high dose antibiotics, maybe they won't.  We just want Cole to have as great of a time as possible.

I had some custom Thank You notes made.  We want to make sure that we show gratitude to everyone that has helped us on our journey.  This Make A Wish trip is a once in a lifetime dream come true and every one that had a part to play in it big or small needs recognition.  Plus it was another excuse to use some gorgeous pictures of my boys.  For those of you who are wondering, I used Pinhole Press.  I wanted something affordable and easy to manage.  These custom notepads were perfect!  This way, Cole can just rip off a page and give it to whoever helps him along the way.  There have been plenty of helpers and I am sure that there will be more on our trip!

Only a few more days to go!

Purple Pictures 2013

We had another outpouring of support for International Purple Day this year!  Friends from all over the world showed Cole and I love by wearing purple and talking about Epilepsy.   Even celebrities like the Cake Boss got into it!  His niece, who is also his god daughter, has Epilepsy.

Cole and Slugger struggled with taking a picture

We had little kids from all different places (some that live all the way in Japan!)

 People who are related to us

 People who don't even know us

and people that we haven't seen for a long time.

People who are related to us in our hearts

 and people who are really dedicated to our cause, whether we see them all of the time or not

(I just realized that you are in here twice, E!  Lucky you!!)

 We loved seeing everything purple from headband and beanies to toe nail polish and even

Grandpa's black/purple eye from a Dodgeball match

 We know that there are a lot of our friends out there that struggle with all kinds of things

but for just one day, it was so beautiful to see people around the world come together

and do something as easy as wearing purple 

to show their support for people who have Epilepsy

 We loved seeing you on Facebook and Instagram
Sorry if I didn't post your picture

We can't wait for next year!

Purple Power

Just How Bad Is Bad?

So things have continued to be a whirlwind around here.  People ask me how it has been going and honestly I don't know what to say.  I don't want their pity or to make them uncomfortable.  Sometimes they don't want to know, sometimes they do...but not all of it.  I probably just say, "Not great" or "Okay".  Translation: Bad.  For those of you who wonder just how bad is bad?  Here you go.

We had a Christmas Miracle, Part II; but not until we went through our personal version of hell.  December proved to be very trying.

The Rocephin shots brought some relief.  Cole was still struggling up to the day that we left for our vacation.  Then he had 5 glorious days.  There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures!  Christmas was not marred by the beast, like it usually is.  Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle.  A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents!  The antibiotics did what we thought they might.  Gave him a little break in the cycle and at just the right time.  We are so grateful.

The daily tonic clonics came back while we were gone.  Then right before we left things settled down again, making us happy but confused.  Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year.  Then things picked up fast and furious.

Re-cap on the last few months:
September-19 GTC's
October-17 GTC's
November-24 GTC's
December-40 GTC's
January to date-18 GTC's

So what exactly do these numbers mean?  It really doesn't seem like they are that high...well, except for that 40.  That number reflects only major seizures.  What is major?

For us, right now, major seizures include most or all of the following:
Loss/altered state of consciousness
Full body convulsions
Drop in oxygen saturation
Need for rescue medications
Lasting over 1 minute
Post Ictal period that includes slowing of speech, sleeping, or Todd's Paralysis
Loss of bowel or bladder function
Post Ictal Blindness

A pretty big list!  This means that Cole is still having plenty of seizures that we don't deem "major" right now.  We don't even count it unless it meets some of this criteria.  So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds.  However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over.  The thing that sucks (pardon my language) is that we can't do a dang thing about it.  All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time.  He usually goes right back to sleep, me not so much.  This is happening on average 6 times a night.  Saturday, it was off and on all. night. long.  He is occasionally having complex partials right now that we are calling "major", but not as often as in the past.  They are almost always generalizing, so they are still being classified as GTC's.

Cole is still having plenty of myoclonics and other small seizures, lasting only seconds.  Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions.  Occasionally I catch absence.  If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day.  I don't count (or I would be running around all day making tick marks into a notebook).  Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva.  We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.

So, what do we do now?  We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds.  For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil.  Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental".  That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)!  Verapamil is looking like it is going to be added to the list of failed meds.

Basically I guess it all boils down to the fact that our life is an emergency right now.  If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me.  I am working on little to no sleep and huge spikes of adrenaline then the crash.  Sometimes I can't even recover before it is time again for life and death situations.  Oxygen saturation at 14% is a true emergency.  Just because we have not been hospitalized during all of this doesn't mean that it isn't serious.  Watching your child struggle and suffer is one of the hardest things in the world to witness.  Feeling helpless is right up there.  We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, experience.  So in between mourning the Mom I Would Have Been  (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here.  It is pretty rough around here, but he is the reason that I get out of bed every day.  He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block.  All he cares about is making a gigantic list for his birthday.
Top wishes include:
Building a bowling alley in the basement..."With a sweeper mom, a real bowling alley."
Ping Pong Table
Ride On Excavator
Tuba
A real pirate sword
Indoor swimming pool
Saxaphone

Geezo, Cole!  Expensive taste, big dreams.  I wish that I could grant them all, except for maybe that real sword.  Right now, my biggest dream is for me to actually be able to count the number of seizures every day.  Maybe even get to the point where we have a day or two completely, totally seizure free.  Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.

The List

In the last few weeks Cole has had a downward spiral.  For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has been happening.  This isn’t even the half of it, but for record keeping purposes I will hit the highlights.

October-Cole starts seizing more often.  At this point we have practically stopped using benzos and rescue meds in general.  He has once again become immune to them and we fear withdrawal symptoms.  Also, in prep for starting Onfi.  Only used rescue meds 3 times all month.  We go to Camp For Courageous Kids.  I still need to write about that.  It was wonderful!  Had our first 3 Tonic Clonics in one day.  We stopped Potassium Bromide in late August and the month of getting it out of his system has ended.  Start Onfi.  Largest break in between major seizures was 4 days.  Every seizure looks different.  Different types, different times, different lengths.  There is no regularity or ability to predict what is coming next.  This has kind of been the theme of Dravet, but this year has just been mind blowing.  It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.

We prepare for Superstorm Sandy.  End up evacuating anyway.  We were gone for 5 days.  Drive 14 hours home.  The next day, Daddy leaves for NYC to help with the aftermath.  He is gone for 2 weeks. 

November-Get a small break when we increase Onfi.  Have 7 days with no major seizures.  Then things get hairy.  Daddy is still gone.  Have a nurse quit and so only have coverage 3 days a week.  Start Anat Baniel Method Therapy.  It is a very slow process with Cole and his sensory issues.  He doesn't like strangers to touch him.

Cole starts having at least 2 tonic clonics every day.  Nothing is stopping them.  Onfi, double Keppra, and rescue meds are hardly working when we use them.  Still using all rescue meds and double Keppra sparingly.  Cole starts having major regressions.  Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth.  Has some potty accidents.  Loses some of the songs he knew before.

Brian comes home and the next day we leave for Miami.  Read about our Florida adventure HERE.   24 major seizures recorded, not counting nocturnal.

December-We drop the rest of the Onfi.  Cole finishes his amoxicillin on the 1^st.  We get ready to start Verapamil.  Want to go back to school and get settled into routine before we start something new after all of the travel.  Silly us.  The 2^nd reintroduces daytime TCs.  It is so weird how he has a honeymoon every time he is on high dose antibiotics.  We start a love/hate relationship with 911.  We call them at least once a week all month.  If you know us at all, you know that it is totally abnormal for us to get to our breaking point so often.  Cole continues to live his legacy and stops seizing once we call, or once the paramedics show up.  Whether we wait for 29 minutes or 8 minutes, the story is the same.  It does not work if we pretend.  He knows J We have to be serious and dial for real.  We start the Verapamil.  Cole catches a cold the first day he goes back to school and shares the love with Mom and his main nurse.  We stop the Verapamil, after one whole day!  Still not sure if it works for him, but we couldn’t know while he was sick.  Also didn’t want to take the chance of a major drop in blood pressure when he was ill.  We take him to the doc, strep negative, flu negative and throat culture is negative. He loses his voice and looks horrible, but still has some stamina.  The entire month the longest break he has from tonic clonics is 2 days, and that only happened once.  The myo’s abound.  The TCs ramp up from 2 a day to 3 a day.  Every single day.  Cole regresses further and does strange infant-like behavior like chewing on his feet and licking the floor.  We try double doses of Keppra, since that helped on the airplane in Florida, kind of.  It helps maybe 1 out of three tries.  Mom gets super sick and wants to curl up in a ball and hide.  We don’t have nurses, so this makes things interesting.  Cole, per his M.O. continues to be sick, for a long time.  At this point, Cole has been de-sating to the 30s and 40s during major seizures and will hover for minutes even with 5 Liters of oxygen.  He is congested and occasionally coughs, but it is just a virus, right?  We throw around the idea of possible pneumonia.  I am talking to the pediatrician daily. 

It doesn’t matter what we do.  If we use rescue meds, the seizure doesn’t stop.  When we used to administer medication like Diastat or Versed, at least it helped to prevent future seizures that day and would give him some sort of a break.  Cole is seizing again within a few hours, even with Diastat.  Has 26 major tonic clonics (this is not including the short nocturnal ones) in 12 days.  During all of this we call Dr Miller.  He suggests that we start Bromide again for a short-term solution.  We know that he broke out in a rash about 2 ½ weeks in to it before.  So, back to dog medication we go.  Immediately we notice that Cole’s speech declines.  By the second day, he is slurring his words.  By the third day, he is drooling even without seizures. We are just looking for a short-term solution.  Something to just break the cycle of seizures.  We know that Cole can’t handle long term Potassium Bromide.  We see our son slipping away from us.  Call Dr Miller again.  Don’t want to wade into any more old medications.  We could start increased eye fluttering, maybe even those evil drop seizures could come back?!  Things are already bad here, why would we want to possibly make it worse?  So, we get into “illogical and completely bizarre” territory.  Discuss things like IVIG or prednisone.  Heaven help us, ACTH comes up.  Also high doses of antibiotics…to control seizures.  Illogical.  Remember how Cole had a honeymoon with the Amoxicillin?   As bizarre as it seems, some kids with Dravet have decreased seizures on high doses of antibiotics.  There are side effects, but it is less risk than steroids.  So-we decided to start 3 days of 1000mg Rocephin shots, that day.  Cole gets 6 huge shots in the behind.  Fun...not really.  Dr Miller wants to keep up the Bromide for a week and we talk about steroids as the next approach.  By now, we are on the fourth day of Potassium Bromide; Cole can barely speak at all.   He is drooling like an infant and does not want to eat.  His gait is slowing.  He is grabbing his face before a seizure, going tonic and then scratching himself.  He looks like he has been in a fight with a rabid raccoon.  Perfect for those family pictures next week.  Brian and I decide to take him off Potassium Bromide.  This entire time we are vacillating between deciding to go or not to go home for Christmas (cross country flight).  The next morning, Cole wakes up shaking like I have not seen him for a long time.  The tremoring and myoclonics are so intense that his whole body is involved.  Almost into tonic clonic territory.  We wonder if it is due to this, due to that.  Always having to play detective.  We give him a double dose of Keppra and 5 mg of diazepam.  Decide to continue with the antibiotic shots.  I say, "We are not going home".  Cole improves throughout the day and regains some speech.  He still sounds like a drunken sailor and cannot say the ABCs, but hey…he is talking!  We’ll take it!!!

The entire day of the 2^nd antibiotic shot, he does not have a tonic clonic.  We are still holding our breath, but so grateful for the small break for our child.  His color starts to come back; he doesn’t look like death warmed over.  Day 3 of the antibiotic (today), at the time of publishing, he has had two big seizures.  Better than 3!  So-if you really feel like nothing is working and your child just keeps clustering no matter what you do,  go out on a bizarre limb and try high doses of antibiotics.  Or maybe not.  It is not a long-term solution, but worth a shot.  I think.    31 major seizures recorded, not counting nocturnal, and we have 11 days left.

 I still don’t know if we are going to go home for Christmas.  But really, what if this is his last Christmas?  Won’t we regret staying just because we were scared?  Our life the last few years has taught us to live to the fullest.  So we will probably put him in a drug-induced stupor, board that plane and hang on for dear life.  Who needs performance enhancing drugs, bungee jumping, marathon running and rock and roll?  Just get a child with Dravet Syndrome and you can have all of the adrenaline rushes you could ever ask for! J

Evacuate

Hey there.... *awkward silence*
It's been a while.  How are you?

We. are. alive.

If you live in the United States, you probably heard of Frakenstorm otherwise known as Hurricane Sandy.  At one point it was headed straight for us.  So, we readied our house.  Our emergency preparedness skills kicked in, full force.  We took everything out of the basement.  Moved all of our pictures and precious possessions to the top floor.  Pulled all of our furniture away from the walls.  Put towels in all of the windows.  Got gas for the generator, bought water and food.  Stocked up on medication.  In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating.  It was the best thing for us as a family, especially for Cole.

Our house was fine and we ended up spending the time in warmer weather.  Some would say, "Why?".  Others knew exactly what we were thinking when we packed up and left in a matter of hours.  Barometric pressure, possibilities of no power, no access to the hospital, etc.  Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it.  We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man.  We didn't need any more uncertainty.  Our life is an emergency and we did not need to add to it.  So, we left for a little while.

I feel like I have kind of evacuated the blog.  Even social media.  No more Instagram, very limited looking at Facebook.  It was the best thing to do in the moment.

I really want to catch you all up on what has been going on around here.  Honestly, it is overwhelming.  Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just stuff.   Cole is having more seizures than ever...and I mean, ever.  I kind of evacuated my life too.  This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet.  Since our nursing is extremely limited I have gone back to full time caregiver 24/7.  The boy is with me everywhere.  He has also been missing lots of school.

Hurricane Sandy also took our daddy's attention for a month.  For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks.  Cole was really struggling during all of this and it could have been a really dark time.  In the end, it showed me that I am stronger than I thought.  I always knew I was good under pressure, but I really reached my breaking point.  That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden.  We are not out of the woods yet.  We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day.  We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.

Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely.  I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes.  In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times.

Stuff like Cole going to the beach.  Playing with cousins we have not seen in a long time.  Cole being obsessed with excavators and wanting to call Santa on the phone.  We have always known that the only thing we can control is our attitude.  So-we had an adjustment and are going to make this holiday season the best that it can be.  Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!

Happy Holidays,
NIK

P.S. We got nominated for an award.  Kind of fun :)

Dentist

We took Cole to the dentist for the first time! Based on recommendations online, I chose a dentist that was known for doing well with special needs patients. The office was beautiful and had a lot of distractions for kids. The staff was wonderful and we really liked the doctor.Cole loved getting to blow up gloves with the air. It took him a while to settle down even though there was a magnificent dragon coming out of the wall and he is obsessed with dragons (and underwater creatures) lately. They were extremely accommodating and Cole did not cry.
The doctor was not worried about his two teeth that have ground down during seizure activity. She said to worry only if we see a visible nerve.

We go back in 6 months!

The Day We Should Have Won An Emmy

Category: Best Drama

No, really...we had an episode of ER in our living room. Also, Dear Lisa-be prepared to laugh.

Set the scene-After a torrential storm that left millions without power, the streets are strewn with carnage from the trees that are plentiful. A house down the street has a hundred year old oak in their garage. The family car is ruined. (side note: *cough* the storm was four weeks ago, but we are being dramatic here :) back to the story) The father, we'll call him Brian, goes out to the yard to survey the damage and finds part of the fence has fallen down and there is a 20 foot limb that graciously left his family unscathed in his back yard. He heads out with a shark tooth hand saw, to make the clean up more manageable.

The sexy, intelligent wife, Niki (Hey-I can be dramatic too!) starts to clean the inside of the home. Keeping watch over their child, who wants nothing more than to be out with his father. She has to run outside to bring him back, twice. She carries him in, saying that it is just too hot for him. So she locks the door to put one more barrier in between him and the outdoors.

She goes about her work and suddenly hears a desperate pounding on the door and screams from the outside.

Brian: Open it! Hurry!

Niki: I'm coming! I'm coming!

She sees blood streaming down his legs, gushing between his fingers. Has a brief flashback of an incident where her father accidentally cuts his face open with a chainsaw.

Unlocks the door and throws it open. Brian staggers into her arms. She leads him to a seat in the kitchen.

Niki: Breathe! Just settle down and breathe.

Brian's head lolls to the side and snaps back up. He moans.

Brian: slurring-I'm okay.

She grabs towels and removes his hand to see that there are multiple small cuts. There is blood all over her hands. She applies pressure and tries to slow the bleeding. Knowing that her husband is prone to fainting at the sight of blood, especially his own, she tries to keep him talking.

Niki: Stay with me!

Brian's eyes roll back in his head, his face is ghastly white and his breathing is fast. There is a noise in the background.

Brian: He is seizing!

Niki has to make a decision, lead her husband to the floor in case he passes out, or run. She chooses to run.

Brian: Slurring-I am okay. Get him.

Niki runs to her son who is having a seizure and scoops him up. She races to another level of the home where the oxygen is located. His face is blue. She tries to wipe her bloody hands on her pants. As she attends to the seizing child she continues to try and talk to Brian, who is on a different floor, making sure he is conscious. The only response she gets is moaning from above. She sets the little boy up with a pulse oximeter and prepares rescue medication. She chooses not to use it, since it looks as if the seizure is going to stop on its own. The seizure lasts for an agonizing 4 minutes. As she attends to the child, her extensive training is guiding her instincts and she is calm and efficient. After it stops, she makes sure he is okay, lays him on his trusty Service dog and runs upstairs to check on her husband.

Niki: You okay? Just don't look at it.

Brian: I almost passed out.

Niki: I know. Just hold this here okay?

She runs back down to the child, who is conscious and asking to watch television. He seems to have incredible strength and tries to stand. He wants to see his dad. She carries him back upstairs and situates him on a sofa, out of sight of the carnage in the kitchen.

Niki doctors Brian's leg, that is so sweaty it is hard to get a bandage on it. There are multiple small, shallow cuts and he will not need stitches. The cuts are starting to clot, so the bleeding is slowing, mingling with the sweat. Even wiping it down with a cloth is not enough to properly get a bandage on. She asks if he can stand and he nods. She leads him upstairs to the bathroom. She grabs the child, calls the dog and situates them on the floor. She proceeds to help bathe her wobbly husband whose color has returned. After the water drains, she doctors the leg again and helps him out and into the bedroom. She places the child on the bed while Brian dresses.

Niki: *sigh* We all just need to take a break. *laughs*

Pan out-Return to scene of Niki three hours later eating stale cheesecake and watching the Olympics.

Brian: *from a distance* NIK!

Acknowledging the cry, she runs into action.

Niki: Seriously? Again?!

She runs downstairs to find the child seizing yet again, this time harder and longer. Oxygen dips, the child is blind. Meds are administered...twice. There is tension in the air, but the team is efficient. They even work with the dog, commanding him, training him to bark and rewarding him with hot dogs.

Brian: This one is bad.

She nods her head and agrees.

Niki: Poor kid.
Mommy's here. I'm here sweetie. I'm going to help make it better.

The two work together as a great team. Brian runs back and forth for various things. After ten minutes, the seizure stops, rendering the child drooling profusely and unable to speak for an hour afterwards. The parents attend to the child who remarkably has great motor skill control.

Niki's stale cheesecake decides to attack her digestive system and she clutches her stomach, runs into the bathroom and shuts the door.
Close scene.

Open on lights going out in the house. Scan every one going to bed after hugs. Their faces look hopeful for a better day tomorrow.

Music plays in the background. Fade out.

No one could make this stuff up.

Going For Gold

In the spirit of competition, Cole has decided that he wants to be the first in line and the best at everything. Even if that includes things like requiring his mother to call 911 and not get any more than 5 hours of sleep per night.

He is a champion, a warrior, much like the athletes in the Olympics. His story is more like those that qualify and are just happy to have the chance to be there. Not expecting to make the podium, but reveling in the experience.

We have kind of been like the gymnast that falls on their behind. Get up, wave and smile...and do it again.

This year has been wild, but the summer has just taken it to a whole new level. This child has needed rescue meds, every day. Even if I try to hold off and let the myoclonics just work themselves out, there is a tonic-clonic, or a complex-partial. Even though some of these facial complex-partials are resolving before I can get there with the meds, the "aftershocks" last for hours. Cole is always trying to be different. His brain is always trying to be the star. Seizures will leave you more exhausted than any workout.

Last week, I called 911 twice in 3 days. That has not happened in I don't know how long.For the sake of record keeping, which has totally fallen by the wayside: Cole went to the ER, after a 30 minute non-convulsive status seizure, with a 103.5 temp, even on Tylenol. He had been having fevers for a couple of days, but for him...that's normal! There were no other signs of illness. It is so hard to tell if Cole is sick, because he does not feel pain the way we do and he never complains. I have no idea if he is hurt, I just have to guess. The doctor said he MIGHT have an ear infection, but with a temp that high, ears just naturally turn red. They put him on amoxicillin, which he has had before and sent us home after his fever went down. That was technically Sunday morning.Warning:don't become friends with us unless you can handle an emergency phone call at 2:00 in the morning :) Thanks, S!

Monday, he broke out in a rash and it spread head to toe. It was not an allergic reaction, but a summer stomach virus. Had nothing to do with the anti-biotic. His ears are fine. Fun! Now the virus has taken up residence in his g-tube site and is causing all sorts of drama.

I have not been keeping score because honestly I would just be sitting with a notebook all day making tally marks. Statistics are dismal right now. SO-record keeping over.

There are times when I think that Cole is trying to make seizing an Olympic sport and he wants to stand on the top of the podium, proving he is the best at it. So many types! So many lengths! Different times, world records! He is a star :) I would hold him up there, but honestly this is not an event anyone should have to medal in.

However, we still have our champion of our hearts and his winning smile.and that is better than any gold medal.

Spotlight

I got the chance to be interviewed for an amazing blog: This Little Miggy Stayed Home. Miggy is a true rockstar and I am honored to be a part of her spotlight series! She is an incredible artist, her paintings are beautiful. She has also been featured on design blogs, is a musician and mom to her adorable daughters, Princess Sparkle Pants and Lamp. You might have seen some of her stuff floating around on Pintrest, but her trailblazing with Lamp is what I respect most about her. I have enjoyed her blog for a really long time and we have been trying to do this for a while. So, I will post our conversation over here on Warriors. Go check it out!

FRIDAY, JULY 27, 2012

Special Needs Spotlight: Cole

I am Niki, wife to an amazing man and mom to 2 kids--one human and one very special dog. I am a cardigan addict, love to cook and I have epilepsy. I was a medical social worker in my previous life, but now I have the cutest boss ever, my son Cole. He keeps me busy! Cole has Severe Myoclonic Epilepsy of Infancy (SMEI) or Dravet Syndrome. Dravet (draw-vay...it's French) is rare and only about 1,000 people in the world have been diagnosed with it, though I am certain that there are more out there who have not been properly diagnosed. Cole is one of the rarest of this group, since he has an inherited genetic mutation on his SCN1A gene, from yours truly. Only 5% of SCN1A mutations are inherited. Dravet is one of the worst forms of Intractable (very difficult to control and treat) Epilepsy. Despite his daily struggles, Cole is a happy kid who likes to swim, pretend that he is in a band and loves jumping off of furniture. He adores his service dog, Slugger and goes every where with him. He is ridiculously funny and is always making us laugh. He is my warrior boy. I write about our journey on www.epilepsywarriors.com

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Miggy: You have a unique situation (a spotlight first I believe) in that you and your son, Cole, both have epilepsy. Did you know your son would probably have this disease? How did your experience as a kid shape your perspective and fears when it came to your son having it as well?

Niki: This is going to be really hard to condense into the Reader's Digest version! First-I had no idea that I had a genetic form of epilepsy. No one on either side of my family has seizures and all of my tests come back 100% normal. Doctors eventually told me that it was a fluke and that maybe it was caused by birth trauma. I never worried about having children with epilepsy. I am a perfectly mainstream individual who got straight A's, has always been independent and never needed any kind of special assistance. I drive, I worked, I have 3 degrees, I was "normal"...whatever that is :) I had a difficult pregnancy, with some issues that all resolved before I delivered, but we had no idea that there was a problem with Cole. He had awesome APGAR scores and I was infatuated with him from the moment I saw him. He was absolutely perfect in my eyes and for the first 6 months he was meeting all of his milestones. Hindsight is 20/20 and I can see now that there were issues from the beginning, but I was a first time mom and had nothing to compare it to. You can imagine my horror when Cole had his first seizure at 6 months old. I knew exactly what was happening and in the forefront of my mind was, "I did this!" In short, it was a very long road to get his diagnosis and through many tests we have discovered that I have something called Generalized Epilepsy with Febrile Seizures Plus, or GEFS+, and Cole has Dravet Syndrome. Even though we both have an SCN1A mutation, our epilepsy is very different. My experiences growing up with something that no one really understood has definitely made me more empathetic, but has also caused me to grieve a lot. I never really knew I had a disability, but I did know what it was like to be different. Try explaining to your date why you passed out and peed your pants. :) Even though Cole and I look absolutely like anyone else on the street, we are very different. You would never know from initially meeting either one of us, that something was wrong. This has been a blessing and a curse. Over the years it has caused a lot of heartache to realize that even though I turned out to be extremely high functioning and independent, I know that Cole will not. However, doctors told my parents after my first seizure, which lasted 45 minutes, that I would either be, "Severely retarded or dead by morning". That obviously did not happen, so I spent my entire life consciously defying the odds. I know to never place limitations on Cole, because he will prove me wrong every single time. Even though he will need to live with me for his entire life, I know that he can do almost anything, just in his own special way.

Miggy: Tell us a little about your epilepsy, vs. your sons. Are you symptoms and the type of seizures similar? How do you handle this double-duty care?

Niki: Wow...even harder to condense. Like I mentioned above, our epilepsy is very different. At this time, I am seizure-free and have had stretches as long as 3 years where I have not had a seizure. There were periods where it really inhibited me, but at this time, I manage well. Mine always stop on their own, but Cole needs immediate medical assistance for his bigger seizures. Cole's longest stretch seizure-free was 5 months, before his diagnosis. At this time, he is having anywhere from 200-400 small seizures a day. With bigger ones that need medication to stop it about once a day. He has seven different seizure types, where I have only had three and in adulthood I only have one type: tonic-clonics. Cole is constantly seizing, getting ready to seize, or recovering from a seizure, so he has to have someone with him-always. Privacy is a thing of the past in our house. He had to wear a helmet for a while to protect him when he fell constantly. He has Diabetes Insipidus (has to do with your kidneys) and Reflux. He can not feel pain like other people and has literally ran around on a broken foot for two days. He has no awareness of safety. He has been on special diets. He also has dysautonomia and has a lot of issues related to this. He can not control his body temperature, so he needs a cooling vest or lots of layers if he goes outside. Even taking a bath can be enough of a trigger to cause him to seize. He also needs special prescription glasses with special FL-41 lenses in them since he is sensitive to light. He is triggered by noise, new experiences, patterns, weather, textures, the full moon and who knows what else. He gets overstimulated very easily and will have more seizures any time he is agitated. He has spent so much time in the hospital that he has actually said, "We're home!" when we pull in to the parking lot. The paramedics know us by name:) His longest seizure was over 3 hours. There was a time when we actually were homebound for an entire year and a half. We did not go anywhere but the hospital. Even just walking from the house to the car was enough to cause him to have a major seizure.

We ended up moving across the country to get him better care and even though it took us away from every thing we knew, it was the right decision. He has gotten a little better with the light issues, so we try to get out a little more now and maybe we are just getting braver as time goes on. Still, every time we walk out of the door we take a risk; we are armed with a lot of paraphernalia, including a nurse and Slugger, just to take care of him. Sometimes it is weird, little things that we totally can't avoid that get him, like the carpet at our church. So-Cole doesn't go to church. We have to figure stuff like that out through process of elimination and avoid those places. He goes to a special education pre-school after a long battle and I am so proud of him. He loves it and has really come far. We have worked long and hard to give him the best life possible. The most difficult thing about Dravet Syndrome is that it is constantly changing. He is always having new seizure types, new triggers, medications that were once working, stop working. Always something new to try to figure out. We have become great detectives, but sometimes we have absolutely no idea what is causing what. Handling double-duty can be difficult. Cole needs someone who knows him really well and is medically trained to be with him at all times. So, this makes going anywhere really difficult. We can't just call a baby-sitter. I have not slept in the same room as my husband for over 2 1/2 years now since he sometimes has seizures at night and needs someone with him. I know that if I am stressed, have not been sleeping well and have not been eating right, I am setting myself up for a seizure. Show me a special needs mom who doesn't meet all of that criteria! :) I just have to make a really conscious effort to not get burned out and try to take down time every day. Doesn't always happen though-hey, showering is overrated! I truly just try to cherish every day that I have him with me. Seriously, that was the short version! Good questions! :)

Miggy: What are the biggest worries you face for Cole?

Niki: Honestly, I wonder who is going to be able to take care of him. There is a high mortality rate for kids with Dravet, a lot of children die in their sleep, but there is not a lot of research out there since the population is so small. He could live until he is 13, he could live until he is 30. I have no idea. His care is so complex and life-consuming that I worry about who could handle it if something happened to me or my husband.

Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Niki: Stuff like this happens to us every day. We love to laugh and find humor in our life. A lot of the funny conversations lately revolve around Slugger. People act like we can't hear or see them while they talk about us or don't notice them taking pictures of him. I was orienting a new nurse the other day and had Cole's many medications laid out on the table. Cole picked up the Diastat (a rectal suppository), showed it to her and exclaimed, "This goes in my butt! I just laughed and said, "Yep! It does" and moved on with my orientation.

Miggy: How can people best approach or respond to Cole? Is there something you wish other people knew so as to avoid awkward or hurtful situations? Again, perhaps you have even better insight since you dealt with this as a kid as well.

Niki: I wish that people would take the time to get to know Cole. He is adorable and totally worth the time even though it can seem overwhelming! We, as a family, can be hard to understand since there are so many limitations on what we can/can not do with him. Don't be afraid to ask questions. I would much rather that you ask than come up with your own answers. It won't make me feel awkward. Not a lot of people understand epilepsy, heck-most doctors don't understand it! Don't be afraid to talk about it. It is a part of our life, but it doesn't define us. Also, if you see someone who is having a seizure, or trying to assist some body who is having one, ask if they need help. I know it looks scary, but sometimes they could really use your assistance.

Miggy: What is the biggest lesson you’ve learned since becoming a special

needs mom?

Niki: ALWAYS be flexible. Don't sweat the small stuff.

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A huge thanks to Niki and a yee-haw for the spotlight being back! I have to say, this is another one of those spotlights where I feel like I've just had the glimpse inside the life of a supermom. As all-consuming as Cole's care is, I appreciate Niki's ability to laugh and find the joy in her life--because it is joyful. I think that's one trick to life with special needs kids and one trick to life in general. Thanks again Niki!

As always if you or anyone you know would like to be a part of the special needs spotlight series, please email me at thislittlemigg at gmail dot com. And if you've emailed me and haven't heard back, please be patient--I've still got a day job you know. :)

Have a great weekend.