Year In Review-Part 1

I decided to just do a little catch up post and it turned into a series :)  That can happen when you don't write for months at a time.  Here's a little about what we have been up to.

For a little bit of history right before 2013, look here

JANUARY
We start off the year in Utah.  After a series of Rocephin shots and a major miracle, we get to go home for Christmas.  Cole enjoyed sledding in Great Grandma's yard in between seizures.

Had our traditional fondue party.  Got to have lunch with some of my Tiger Moms.  We went bowling for Cole's birthday at least 3 separate times.

Had Snowquester.  Frontal Lobe Nocturnal Seizures are in full force.  None of us are sleeping.   Found out Cole was accepted for Make A Wish with Rush Status.  Total Major Seizure Count (this is mainly tonic clonic, drop in O2, convulsion, not nocturnal): 22

FEBRUARY
Started the second Gourmet Club season.  We start a long journey with Cole's bowels and end up in the hospital, twice for backed up stool.

Found our awesome Gastro, who in this small world went to med school with my cousin and used to live down the street from us in Utah.  Who would have thought?!  Had a Favorite Things Party, I can't help it-I love excuses to party!  Had a major friendship break up.  I don't think we talk enough about how this can impact us.  I liked this point of view.  Total Major Seizure Count: 23

MARCH
Took Cole to see the Sea World exhibit in DC in anticipation for Make A Wish.  Started a fitness competition with friends.  I start going bald.

Feeling very unwell.  Initial diagnosis is Lupus.   Went to Miami Childrens.  More tweaking of the meds.  Always tweaking.  Purple Day, we love it!  Had some of our wonderful friends come and stay with us for Easter.  Total Major Seizure Count: 33

APRIL
Went downtown to see the cherry blossoms for real.

First time we had just barely moved, Cole was in the hospital downtown and I was literally throwing up in the car as we headed home after discharge.  They were pretty through the window!  Second time, we had crazy weather and the bloom only lasted for 3 days, so by the time I made arrangements to get down there it was over.  My diagnosis has been changed to possible cancer.  Then back to Lupus.  Had a milkshake that changed my life.  Make A Wish.

 This deserves multiple posts.  It was such a bittersweet experience that we will remember for the rest of eternity.  Not sure when the documenting will actually happen.  The scrapbook that Crops Of Luv made for us is something that I will treasure forever.  I turned a year older.  Total Major Seizure Count: 31 (breaks record for most in one day with 6).

Stay tuned for exciting stuff like Hawaii, more trips to hospitals near and far and more!

Dropped Off

Hey Friends-
Sorry it seems like we have dropped off of planet earth.

Our little world has been chaotic, to say the least, these last few months.

The extreme Reader's Digest version:
* Make A Wish was awesome.  Cole struggled.  We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily.  Mostly at night.  Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days.  Had to detox Cole and have some tough decisions ahead
* I don't have lupus!  YAY!  I do have fibromyalgia, and possibly osteo arthritis.  I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months.  By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of.  Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful!  I have missed my Hawaii home so much
* We don't sleep.  At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month.  Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you).  I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here.  Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance

There are a lot of Grand Canyon sized gaps in there.  All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day.  We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis.  Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy.  Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all.  Or maybe I am just trying to make myself feel better about not vacuuming? :)

Peace and Blessings, Friends!  One of these days I will jump back on the bandwagon.

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

Our Florida Adventures

We had our 6 month visit with Dr Miller scheduled for November.  We decided to move it from the regular clinic day and combine it with our Thanksgiving break.  Two birds with one stone! 

Before we even got to the hospital, we had all sorts of drama.  Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying.  Somehow taking care of a seizure at 30,000 feet isn't so easy.  Landing the plane, also not so easy.  We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight.  God has a sense of humor!  Cole made the flight, but had a severe seizure at baggage claim.  We were quite the sight.  Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on.  Hey-he didn't have one ON the plane!  The next day he was so bad that we considered calling 911 and going to the local hospital.  However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day.  We didn't call, Cole made it through the night.  We got up the next day and headed 3 hours south to Miami Childrens Hospital.

While we were there, Cole had his first sleep study.  Results show there is no major change.  He is still seizing throughout the night.  No sleep apnea though, hooray!  We discussed with Dr Miller the increased frequency in tonic clonics and myoclonics.  Cole had not been sick lately and we felt like we had a baseline established, as fluid as it was.  Bottom line was, we knew that the Onfi wasn’t working. 

Dr Miller, as great as he is, basically tells us during our appointment that we are running out of options.  Which we kind of already knew, but it is hard when one of the best doctors in the country for what your child has, tells you that he can’t help you.  Cole has tried 7 or 8 meds at this point and has failed them all except Keppra-which we really don’t think is working very well anyway.  So we decide to get off of Onfi.  Next stop, Verapamil (a blood pressure med of all things).  You know we are all about Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old meds.  We discuss alternatives such as VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as ACTH or prednisone.  He wants to see us in 3 months.  Okay, now things are really getting real.  On the day we visit Dr Miller, Cole has three tonic clonics.  He also seems really sensitive to light.  Much more than usual and is hiding his head under a blanket.  I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.

The next day all hell breaks loose.  Cole has 4 tonic clonics and was basically in NCSE (non convulsive status epilepticus) the entire day…we just didn’t know it.  He is inconsolable and we can tell that he is in terrible pain.  He is actually complaining of eye pain.  For a kid who has run around on a broken foot, twice, this is huge.  The light sensitivity is very intense and he wants his special glasses on even indoors.  We try a double dose of Keppra, Motrin, Tylenol…nothing is working.  We contact Dr Miller and tell him we suspect a migraine.  He tells us to give a combo of Benadryl and Aleeve.  By tonic clonic #3 we are getting anxious.  We give Versed, it doesn’t help.  Cole can’t hold up his head, is drooling profusely and can barely speak.  Yet, he doesn’t want to be left out.  The boy is adamant that he is a part of the holiday party and refuses to sit out in the car with me.  So I take him inside and he sits on our laps, wrapped in a blanket as we eat and looks the definition of disabled, which is rare for him.  But he is there and he breaks out a crooked smile; such the definition of resilience.  At TC #4, it is evening and we call the on-call neuro, who told us she was extremely nervous and wanted us to come in.  It is never reassuring when a neurologist admits to you that they are nervous!  We explained that we were 3 hours away and would have to be Life Flighted, which could take over 5 hours from start to finish since we had to go through the local ambulance, hospital, etc.  She agreed that it could take too long.  Getting through to a new hospital that doesn’t know us and doesn’t know Dravet takes forever.  By the time they believed us enough to call Miami and get the go-ahead, it could be hours.  Remember he isn’t actively seizing at this point so to a regular doc, he would look fine.  She suggested that we actually get in the car and drive down.  At the end of the conversation she gives us instructions to give him Diastat and a double dose of Keppra.  If he has another, we are to call AirMed and get down to Miami.  No matter how inconvenient it is.  The Diastat in combo with the other meds settles Cole’s brain to the point he can sleep, just through the night.  It also tips us (and Dr Miller) off to that his supposed “migraine” was actually bizarre seizure activity.  Since pain relievers did nothing for it and a benzo did, it was probably seizures.  Weirder things have happened with Cole.  Add it to the list of "rare".  Most regular people would sleep for a day or two with all of those medications in their system, not our Mini Hulk!  He only got a 7 hour nap.  We truly experienced a miracle though and made it through the night.  I really didn’t want our first helicopter ride to be in a different state and take a couple of hours.  Thanks divine intervention! J

Those meds carried over and he did not have a major seizure the next day.  However, we got a new surprise at night.  Cole started having major nocturnal seizures.  Tonic clonics that last from 30 seconds to a minute.  He will sit up in the middle of the night, grab his face with his shaking arms and have full body convulsions.  We can only hold him and tell him that we will be there for him.  They are too short to drop his oxygen and don’t need meds.  However, it gets my brain kicked in to overdrive and I just lie there awake, waiting for the next one.  One night he had 9.

The next day, I had my mommy instinct telling me he might have an ear infection.  Mind you, there was no complaints of pain, no major fever, no pulling of the ears, no lethargy, just a hunch.  We took him in and BAM, both ears were infected; they started him on  Amoxicillin.  The rest of our Thanksgiving break was full of nocturnal seizures, but he had a break with daytime ones. 

I was so ready to go home.  I wanted our routine back.  There were rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money.  The hurricane, him being gone, Miami, the holiday and all of these seizures were getting to me.  So, we were grateful for the break from daytime chaos.  Well, at least where seizures were concerned!  We had a great time with our cousins and other family members that we don’t get to see very often.  Plus, it was 80 degrees the day we left!  Is 32 too young to become a snowbird? 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 :)

Return To Oz

Has it really been almost a month since we were there?  Seriously, kids-things have been super crazy around here.

Cole has been sick since May 7th.  Not during cold and flu season, weird with a capital W.  Hasn't been to school more than a couple of days all month, so he isn't catching things from the germ factory aka preschool.  Possibly caught something on the plane, something else at the hospital, something else on the plane...who in the heck knows.

After a round of antibiotics to quell symptoms of concurrent infections-sinus, ear AND eye...he is still ill.  Had a middle of the night seizure for the first time in a year and a half.  Had two major seizures within 6 hours of each other.  More tests, more tests and no answers yet.  SO-with my little adventure last week into the world of blinding migraines and sick Coley, our world has been more chaotic than normal.  Which is to politely say-unhinged.  I know that you were all just on the edge of your seats waiting for my update, right? ;)

I will tell you about it, before I forget the details.  Like how the paparazzi came to the airport and everyone was taking pictures of Slugger.  Or how Cole and Sluggie got invited into the cockpit.

Florida was it's usual self.  Full of stress and serenity.  Prompting lust towards places where palm trees and plumeria thrive.  Silent worship of the waves and their wonder.  I wish that we could live on my in-laws lanai.  We could seriously be okay with being there all day every day.

We saw a lot of this....

Cole had a major seizure almost every single day we were there.  Slugger did not alert for any of them.  He was always ready to come over and do his job of comforting Cole though.  It still chokes me up when my baby starts to wake up and slowly strokes his best friend.  He looks at him like, "Oh, good.  You're here."

I, myself had some undiagnosed issue which I am attributing to a malfunction of my kidneys, as they are prone to break down at the most inopportune times.  I keep trying to send them love notes and tell them that I need them to cooperate, but they continue to refuse to listen.

We actually almost ended up going to the hospital, before we went to the hospital.  Confused?

We called the paramedics, who would have taken us to a new hospital that did not know us and had no idea about Dravet, so they would have admitted us after being in the ER for hours.  Springing the joint in time to take the 3 hour drive to Miami to make our appointment there would have been virtually impossible.  Thank goodness Cole's brain got the memo, just as we were ready to pack him out the door and in to the fun wagon.  Relief doesn't even begin to explain it.

While we were in Florida, Cole started having new presentations with complex partial seizures.  Only his face muscles would convulse, and there were no leader seizures.  He had more tonic-clonics in one week than he has had in years, maybe ever.  He also had ictal vomitting (during seizure, not after like usual) and it is SO scary.  You need to make sure he doesn't aspirate the vomit into his lungs.  His body is not concentrating, as there is an electrical storm in his nervous system.  So, while you are trying to manage his oxygen, keep him safe, stabilize his body temperature, administer meds, etc you are also having to protect his airway and your mother in laws carpet.  Dravet can make a multi-tasker out of the best of them.

I feel like we are the motley crew from the Wizard of Oz, all seeking new and improved things from the Wizard.  In this case, the experts at Miami Childrens.  In the end, the answer is always within us, and we know all along what we need to do (have resiliency and faith).  Sometimes we just need a little help to remember that we can conquer our fears with the right attitude.  A reminder to have courage, use our brains and to have our heart guide us.  Miami is a wild and mysterious place.  The road was not made of yellow brick, but the journey to get there was treacherous.  Each time we go back, I think of the Tin Man, Lion, Scarecrow and Dorothy.  Hopefully we never get picked up by a hurricane, Florida's version of Kansas tornadoes.  We always meet great people aka good witches while we are there, but Dravet is like the Wicked Witches....if I could only figure out how to melt it or smash it with a house.  By the end of the trip, all I want is to get home.  Maybe I should wear red shoes next time? :)

 We did have some fun while we were there in between all of the seizures.  We spent a lot of time in the pool, and eventually we finally made it to the beach.  Slugger was a little wary of the ocean, but got used to it quick.

 We had some good laughs and Brian even got his early Father's Day present.  All he wanted to do was go water skiing...so I finally sent him to a place that every single time we drive by he says, "That would be cool."  This is his way of saying, "I really want to do that."

After almost 6 years, I finally convinced him that it was okay to go and have fun.  Seriously, it is ridiculous trying to get this man to do something for himself.  Pay $25 and a cable will drag you around for an hour, no boat.  Happy husband.  I can't even buy him dinner for that much in D.C.  He had really sore legs the next day, but he said it was totally worth it...with a smile on his face.  Someone even called him "gangster" for skiing when every other single person there had a wakeboard.  He thought that was awesome.  Points for Nik!

We got to see some of our friends, our family and we celebrated Mother's Day.  Even attempted to take the boys to church, but seizures stopped us.  Didn't stop me from attempting to take a picture of my dapper lovelies ;)  

I have a love/hate relationship with Florida right now.  We only go there for an ulterior motive...to seek medical attention. It is a total bonus that our family lives 3 hours away from the best doctors in the country for our son.  So, I love that we get the opportunity to see them a couple of times a year, when it would not be feasible otherwise.  I love the ocean, I hate that I can't really enjoy it when i am there.  I love that we have an awesome team of doctors and we get to meet other Dravet families.  I hate that we have to go so far to do it.  Back and forth, back and forth.

I guess I am kind of like Dorothy running away with Toto to save him.  Claiming that she is doing every thing possible to protect her best friend when others tell her she is dreaming.  However, if she never would have tried to save him from her evil neighbor, she wouldn't have had an incredible adventure.  Cole is my adventure.

Sometimes I Don't Want To Be A Tiger...

I would really prefer to be a sloth.

Good for me I have a stubborn streak and a dose of perfectionist. It means that things still get done (not every thing), even if I wish that I could just sleep in a tree for 18 hours a day.

It seems like I have been a full-time Tiger Parent lately. I mean, I always am...but the last few months I have been roaring so much my throat is sore.

The trip to Miami was good, but long. I always have a mixture of anticipation and dread when we visit. It usually means something new, which can be good or awful. I do love the team there though, it makes something that is so stressful, semi-enjoyable. I love that we have doctors who will listen to me, feel like they can give me their opinion without forcing it on me and in the end do what I ask. I truly value their expertise and when they suggest that something is or isn't necessary, I take them seriously.

I love that I get to meet new parents there. Some that have been Tigers for a long time, some that are still cubs, wet behind the ears, still trying to get their bearings. We all have something to give each other.

I think that I will save our findings and a full update on our trip for another post. There are some changes on the horizon. It will take months to see if it is even going to work.

With IEP's, Medical Review Boards, new nurses, Cole's condition putting us in a constant scramble to get a handle on it, trips to Florida, my own health deteriorating and everything else that is going on in my crazy life; I also have to give in to the nagging feeling that it is time to go back to school. Yep, in my spare time. A death wish on paper, but I can't deny that I have been thinking about it for a long time and I feel like I need to start now. All so that I can provide better for Cole.

Maybe I should have my head examined. I could be transforming into a jungle cat.

A View Inside MCH

I'll finally get to that mini-tour of Miami Childrens Hospital. We really loved all of the beautiful murals. Each one was unique. This one is outside of the playroom on the 3rd floor.They even painted small corners.
Cole liked the lights around the ceiling at the main entrance.
The colors were all so beautiful.
This was on our floor. The little shiny circles are mirrors.
Cole loved the Radio Lollipop staff and their contests. It was fun to have a live radio show coming from down the hall!
Cole really loved exploring the halls once he was unhooked. He of course gravitated towards the fish tank in the neurosurgery waiting room. The boy loves his animals!Here is a picture of the waiting room at the Brain Institute, where they hold the Dravet Clinic. Notice how it is white, without many patterns. Still a great room though.
All of the elevators are decorated different.
This is down in the main lobby.
Here is another one of the murals that incorporates mirrors. I really like how they have used so many different mediums in the entire hospital.
This is one of my favorites. I've always loved flamingos.
All in all, the entire hospital was decorated beautifully. This is just a small preview of the thought and care that has been put into its design.

Vacation?

va·ca·tion/vāˈkāSHən/
noun
1. A period of time devoted to pleasure, rest, or relaxation, especially one with pay granted to an employee.
2. a. A holiday.
b. A fixed period of holidays, especially one during which a school, court, or business suspends activities.
3. Archaic The act or an instance of vacating.
intr.verb. va·ca·tioned, va·ca·tion·ing, va·ca·tions
To take or spend a vacation.

People have been saying that they hope I am having a good time on my vacation.

Thing is, this is anything but. I may have gone overboard comparing this place to Disney. I am more than ever, being reminded of my life's circumstances. There has been no rest, relaxation or pleasure. The only one who is having any fun per se, is Cole. That is, in between the torture. Today on his activities list were things like a nephrology consult, someone scrubbing his scalp violently with acetone to remove 5 day old superglue, a fasting blood draw, adjusting to a new medication, a kidney ultrasound, the usual daily poking and prodding, a very long process of washing his scalp and laboriously combing out the remnants of the glue...5 times. Not exactly what I would call fun.I don't know of any retreat that requires bringing three binders full of medical records as part of your luggage. Brian does not have paid time off built up yet, so technically, this is not even a vacation in his employer's eyes. We are going without pay to be here. We get the unique pleasure of sitting in a small room, in uncomfortable chairs all day and speaking to doctors. There has been very little rest on my part. It's not easy to sleep in a hospital bed, with a restless toddler whose knees are in your back, arms flying everywhere. To top it off, you have to hold a button in your hand and be poised, ready to hit the trigger at the slightest movement throughout the entire night. The only one who gets room service, is Cole. The rest of us are left to fend for ourselves, cafeteria style. The anxiety of the entire thing has done a number on my stomach and it will probably take a couple of weeks to get back to normal. I wish that I was actually in Miami to lay on the beach with a pina colada (virgin) in my hand. Really, we could be in North Dakota for all that we have seen of this town. We're not even close to South Beach and the only sights we have seen are the 3 floors of MCH.The truth is, we are here because things have been getting worse...not better. Just because we have had access to great doctors and nurses here, does not mean that Cole is going to be cured or that he won't still have to struggle every day for the rest of his life. We are just hoping to give him the best chance possible at having some freedom from seizures. To actually want your child to have seizures, is one of the strangest phenomenons I can think of. Especially when you have been praying for almost his entire life that he won't have them. To wish him struggle and pain, just makes me sad.

Believe me, I wish we were in Florida to take our 3 year old to a theme park. Truth is, the money (which we don't have a lot of) spent and lost from time off, on this trip could have taken us all on a Disney Cruise...and then some. Honestly, I am worried about paying our rent. However, this is the right place for Cole. I have felt it every day, multiple times a day since we set foot on campus. It helps when every one who comes in the room tells me how adorable he is and how they wish all patients were as cute as him. Even some random older woman, who brought a couple of toys to give to children, was paraded directly to our room with a staff member to present Cole with a Handy Manny flashlight. The staff knew that he would give the perfect reaction and a gracious "thank you!".

One of my friends sent me an e-mail the other day exclaiming that reading the blog has made her "homesick for Miami". She brought her son here a few months ago. Now, I don't know anyone that wants to pack their bags and go to a hospital. I think I know exactly what she means though. She misses the support. She misses having everyone already understand, to an extent, what her little boy is going through. She misses not having to explain herself over and over. She misses the peace of mind knowing that while she is within these walls, everything humanly possible is being done for her child. So even though Brian got to go water skiing and we spent an hour and a half at the beach, this has still been a hospitalization. A tough one. Yet, the opportunity to meet other families, swap war stories and get state-of-the-art treatment for our son has made it bearable. I would do anything for Cole. Anything. And this hospital is going to help me do that.Dr. Ian Miller, physician extraordinaire