Reflect

So much has happened this year.  As I reflect on 2013, though we are no way close to December 31 in our little world-days can be extremely laborious at times and you can't predict tomorrow, I am sometimes shocked at the changes.  Other times it seems like we were just here, getting ready for the holidays.  You know what they say, "The days are long, but the weeks fly by".

I have not been writing, due to the chaos of life at the moment.  Those moments seem to merge into months.  The multiple hospital visits, all over the country took up the majority of the middle part of the year.  Cole has been in an ever downward spiral, despite the multiple new treatments we have tried this year and the new perspectives we have sought out from specialists.  In April when we went on Make A Wish, the most tonic-clonics he had ever had in one day was 6.  On Thursday, he had 63.  Friday he had 49.  We even considered moving across the country, again, to get Cole more assistance.  Add to that my own health issues-going bald, having a lupus diagnosis, retracting that and thinking maybe cancer, finding out that it was just Fibromyalgia.  Discovering that my osteoarthritis is so severe I could be a candidate for double knee replacements.  Lots of tests and shots and then the capstone of finding out I need hearing aids.  What's next?  A walker?  However, through the trials of this year I think that I have gained some sense of coping.  I really liked Victor Frankl's book Man's Search For Meaning and I agree when he says, "When we are no longer able to change a situation, we are challenged to change ourselves."  Unfortunately, when it comes to health issues you really can not change a lot.  You can eat right, exercise, etc. but when you are dealing with faulty genetics there is not a lot you can do to change the final result.  So back to changing yourself.  The only real thing that I could change over the last year is my attitude.

I think of last year at this time.  We were giving Cole huge doses of Rocephin shots, because 3 big seizures in one day was just too much.  We were exhausted emotionally and physically.  We were so depressed, that we did not even decorate our Christmas tree.  My marriage was on the verge of collapse-see, even people who seem like they have it all together, don't have it all together.  There was just an overall feeling of overwhelming doom.  Now, in between the bouts of sadness we still found ways to laugh.  You will never find this house devoid of laughter as long as Cole is around.

Our circumstances have not changed, they have only gotten worse in many instances.  Yet, there is a new strength that is developing in all of us.  Sometimes when you have to work so hard to find the good times, it really makes you appreciate them.

Sobering

I have been in the throes of medical records again.  When you see a new doctor, they always want to know what has been done in the past, what meds, what tests, etc. etc.  Digging through the last 6 years has been sobering.  What Cole's body has been through, the meds that he has tried, the hospital admissions...it really is too much for anyone that hasn't even entered Kindergarten.  However, I look back and see how strong we are.  We should have had at least two nervous breakdowns by now!!! :)

So, for the future and to be able to access it quick via the nice, old friend the Internet-I present a history of the treatments tried for my son:

Anti-Epileptic Medications (including atypical treatments)
Phenobarbitol
Versed-rescue (Buccal and Intranasal)
Ativan-rescue
Propofol-rescue
Keppra
Diastat-rescue (rectal suppository and tablet)
Ketogenic Diet
Klonopin-rescue and daily
Depakote
Topamax
Low Glycemic Index Diet
Potassium Bromide
Rocephin
N-Acetyl Cyestine
Clobazam
Verapamil
Prednisone
Diazepam tablet-daily
Phenobarbitol-rescue and daily
Zonegran
Ativan
Stiripentol
*Note:  Some medications are listed twice.  This is due to a reintroduction after many years of discontinued use.  Rescue meds, used as needed, are also listed.

Adjunct Medications
Acetaminophen
IB Proufen
Amoxicillin
Potassium Phosphate
Carnatine
Magnesium
Calcium
Centrum Multi-vitamin
Nano VM Multi-vitamin
Vitamin D
Mirilax
Cefdinir
Sennakot
Lactulose
Metamucil
Multivitamin Supplement (Carnation Instant Breakfast)
Magnesium Citrate

Treatments and Equipment
Oxygen
Pulse Oximeter
FL-41 Lenses
g-tube
Feeding Pump-IV pole, Feeding Bags, Syringes
SPIO-Stabilizing Pressure Input Orthosis
Therapy Swing
Helmet
Cooling vest
Wheelchair
Enemas
Seizure Alert Service Dog (he really is listed as Durable Medical Equipment in the law)
Suction Machine
iPad
All equipment required to administer medication-pill crusher, syringes, g tube extension, etc.

Additional Therapies and Treatments
Homeopathy
Neurofeedback
Speech Therapy (also including feeding therapy)
Occupational Therapy
Physical Therapy
Aquatic Therapy
Anat Baniel Method Therapy
Craniosacral Therapy
Sensory Integration Therapy
Behavioral Therapy

Specialists
Neurology-6 different ones
Epileptology
Genetics
Dietician
Opthamology
Gastroenterology
Anesthesiology
Surgery
Cardiology
Orthopaedist
Podiatry
Orthotics
Neuropsychology
Nephrology
Endocrinology
Developmental Pediatrician
G-Tube Nurse Practicioner
Bone Health Specialist (Ortho)
Pulmonology
Pediatric Dentist
Behaviorist

Hospitals
PCMC
IMC
CNMC
MCH
IFX
CCHMC
SCH

I was getting my hair done the other day and I spent the entire time I was "processing" on the phone making doctor's appointments.  My friend asked me if I felt like we lived at the doctor.  I had to be honest and say, "Yes".  Looking at it all listed out is a little overwhelming.  I am positive that I have missed something (probably more than just one something).  No wonder we are tired!  All I know is Cole is worth it.  We will keep fighting.

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.

Grateful

Hi there~

If you are new to Epilepsy Warriors, welcome!  You probably headed over here because you got something that looks like this

We just wanted to say Thank You again!

If you want to learn more about Cole, you can go here.

To learn more about Slugger and the special work he does for Cole, you can go here.

We encourage you to look around the website and feel free to e-mail us any questions or comments  at epilepsywarriors@gmail.com  Let us know your experience of meeting Cole and Slugger!  If you want to contribute to Cole's custodial account for his medical debt, you can use the PayPal button on the sidebar.  Living with a rare disorder is extremely expensive and every little bit helps.

Thank you so much for making this trip magical.  Cole really struggles on a daily basis with a condition that is very hard to treat and makes it hard to be a regular little boy.  He is happy though and you probably noticed his amazing smile.  Our wish is that you will pass that magical smile on to others.  You never know who will need it!

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!

A Big, Hairy Mess

Stress is not a joke.  If I can do anything right though, it is handling stressful situations...so I say to myself.

I, in my previous life, worked in very stressful situations and helped to guide others through some of the most difficult times of their life.  I've had my fair share of scares throughout my existence and have had to learn how to deal with a body that I can't control.

I remember a prank that my dad pulled one day on my family.  He loves practical jokes and is known for pulling off some of the best April Fool's jokes, ever.  He was carving a turkey with an electric knife and pretended to cut his hand open.  He had squirted ketchup in his hand previously, so when he lifted his arm it truly looked like blood from a distance.  He had to take my brother aside beforehand to tell him what he had planned, so he wouldn't be shocked.  Something to note also is that when I was very small, he had an accident where he literally cut his face open with a chainsaw while working on our farm.  So...cutting body parts with motorized sharp stuff=not funny in our family.  One sister screamed, curled up in a ball and covered her eyes.  Another just started to cry.  One started yelling obscenities (I have a lot of sisters).  My mom freaked and got mad at him for cutting himself.  I, got up and ran to him to help, asking him questions about how he felt as I ran over.  When he showed that it was a joke, everyone was really upset and did not think it was as hilarious as he did.  Funny thing...he hasn't tried to cut off an appendage since ;)

Now, I mean nothing against the females in my family.  I love them all dearly.  I am not trying to say that I am the good one, or the brave one.  This story just shows that I can handle stress pretty well.  I tend to freak out alone, in my head, after the fact.  See this more recent incident.  I know that my life right now is extremely stressful.  Brian and I took a test from his grad studies again recently and we are at the highest end of the stress spectrum.  Fun.  What I am getting at is that I know that things are rough.  I try to take it in stride and take as good care of myself as I can.

Then a few weeks ago, something happened.

 I was blow drying my hair and low and behold, I found a bald spot about the size of a quarter.  Isn't that every woman's (or mans for that matter) dream?  I knew that my hair had really been thinning a lot, but I just thought it was stress.

 I have (usually) extremely thick hair and have to get it thinned with a razor about every 6 weeks.  You can see here my new, lovely receding hairline.  Thank goodness I have been growing it out so I can rock a major comb over!

Alopecia Areata is something that can happen under extreme stress.  I also knew that it could mean something else was happening.  I have not felt well for a long time, but I just attributed it all to the hectic pace of my life and that fact, once again, that it is pretty stressful around here.

It doesn't matter how many support systems you have in place, caring for a child with extreme special needs is hard.  I know that we as a family have suffered in our  jobs, church callings, finances, relationships with our friends, each other, extended family...the list goes on.  Did you know that research has proven that primary care givers have the worst oral hygiene of anyone?  If you have to go to therapy 5 days a week and see 11 specialists for your child, getting your teeth cleaned totally goes on the back burner.  Next thing you know, it has been 3 years since you have seen a dentist.  That goes for lots of other things too.  SO-I haven't been in to the doctor for a while.  The going bald thing threw me for a loop and I made an appointment right away.  It could be stress, it could be something else.  But I wasn't going to wait around for the rest of my hair to fall out!  My head is just not shaped well enough to pull off the Bic look!  However, I will trade baldness for seizures any day.  I am seriously dumbfounded that I have not had a seizure during all of this.  A true blessing.

The initial results show that I have markers for Lupus or another Autoimmune Disorder.   So my body is attacking itself.  When it attacks the hair follicles, thinking they are foreign, it falls out.  So, therefore I am 32 and going to join the ranks of many senior aged men.  I have a lot of other symptoms that fit the bill.  The final diagnosis is yet to be confirmed, while awaiting more test results.  The bottom line is, something is wrong.  The first thing they tell you to do when you are diagnosed with an Autoimmune Disorder is to de-stress your life.  That is not going to happen! Cole had three major seizures last night, something that unfortunately is totally normal around here.  Thanks for the advice, but it is not my reality ;)

I honestly am not allowing myself to freak out about this or slip into a depressed state.  I have learned over the years that I absolutely can not control the fact that my body is frequently prone to freaking out. So, I just have to treat it as good as I can and hope for the best from it.  Sometimes it gives back, other times it feel like I am 93 years old.  Now I guess I know why! ;)  You probably can also guess that it has taken a toll on my blogging amongst other things.

With everything that is going on in our little world, I keep a positive outlook.  Someone said to me the other day when we were discussing the newest developments with Cole and I, "Niki, I can't believe that I am sitting here, listening to you tell me all of this really horrible, bad stuff that is happening in your life...and I still feel happy and reassured.  You are an example to me of a positive attitude while not being in denial of the hand that has been dealt to you."  I assured her that I was only human, but it is just a part of me to be this way.  I will put a little plug in for my attitude.  Yep, I still get lonely, hurt, frustrated, afraid and a bunch of other negative emotions with the rest of you.  I probably seem ticked off a lot of the time when I am just probably worried about how to best take care of Cole and my family; or being quiet because I simply want to be quiet.  If you don't ask what is going on, then you assume.  Sometimes it is hard to paste a smile on constantly and pretend, but ask someone what they are thinking about before you assume that you know what is going on inside of their head!  *off my soapbox* All in all I think that my attitude is the only thing that I have control over.  So while I am realistic about our situation, I don't want to (or frankly have time to) curl up in my bed and cry for a week.  I've got too much to do-including getting excited for our Make A Wish trip!  It has been a real bright spot.

Darkness exists, but we do not have to dwell there.  There are always going to be bad people, bad stuff happening and negativity.  Look at this week alone in America.  Multiple stabbings at a college, a bombing at the finish line of the Boston Marathon and a plant explosion that took many lives.  There is hard stuff all around us.  I was obsessed with Mr Rogers as a child and I love what he says about these kind of things, "When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers.  You will always find people who are helping.'  To this day, especially in times of "disaster", I remember my mother's words and I am always comforted by realizing that there are still so many helpers - so many caring people in this world".  My faith teaches the same thing.  We can be there for each other in times of trial.

I know that the real friends will come out of the woodwork during this hiccup in our family's bumpy road.  I hate to be the one to not be the "helper".  A wise friend of mine once told me though, "Allow people the opportunity to serve you" and it has stuck with me.  If you are reading this, think of someone who might need you to be the helper.  It may be a family who has a child with special needs.  A widow.  A divorcee.  Someone who is lonely.  Someone who lost their job.  Someone who is sick.  We all need help.  Every one of us.  Even if it is not out there flashing in neon lights.  Don't just say, "Let me know if you need anything".  Show up and do their dishes.  Mow their lawn.  Take their kids so they can go on a date.  Come over on a weeknight with a tub of ice cream and a good movie.  Send them money, with no strings attached.  This is an excellent article about all being enlisted to help each other through this journey we call life and the lessons that we can learn from each other.  I am re-committing myself to look for opportunities to help others and to *sigh* let others help me.  As soon as I finish looking at wigs online ;)

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

Purple Day 2013

Hey, we are still alive!  Still surviving.  The roller coaster has turned into something like Montezuma's Revenge at Knotts Berry Farms (do they even still have that?).  You know the one that goes upside down and backwards at the same time?  Not really even up and down, just face contorting immediate g-force, making you want to throw up.  Yet, you are having a great time on the ride :)

We went back to Miami.  I will catch up on that later.  We have changed, added or dropped meds more times than I would like to count in the last 4 months.  Still no significant change in seizure control.  Cole continues to seize every day.  The drama in December, is just commonplace around here.  Four or five major generalized tonic clonics, that last about 6 minutes a piece, during one day is the new normal.  We consider it a good day if there is only one big daytime seizure that is over a minute.  Night time has become intense, with around 9 big seizures that last about 45-90 seconds is average.  The screaming, look of pure terror and having your baby be inconsolable throughout the night is just torture some times.  Yet, Cole keeps finding reasons to smile and laugh every day, so we do too.

Epilepsy is a condition full of unknowns.  Dravet Syndrome has even more unknowns.  Please wear purple tomorrow, March 26 to raise epilepsy awareness.  It is underfunded and people are not educated about it.  There are still a lot of countries where people who have epilepsy are truly believed to be possessed by evil spirits and are shut out from society.  More people have epilepsy than Breast Cancer, Parkinsons and Cerebral Palsy combined!  Wear purple and talk about it.  Maybe together we can find a cure.

I would love to have your pictures.  Send them to me through e-mail, Facebook or text them to me.  Last year we had so much love and support.  Cole needs it even more this year.  Can you believe how much he has grown since last year?  Look at my hair!  Wow, it is amazing what a year can do.  To read the story about Purple Day and to see the other times I have written about it, go here.

Glad I Listened

You know, after what seems like thousands of doctors appointments, it can get hard to absorb all of the information.

This week has been kind of crappy, pun intended.  Warning to the wise, I am totally going to write about bodily functions.

The boy has not been himself lately.  I took him to the doctor last Thursday because there had been an increase in seizures and some congestion.  Wanted to make sure that it wasn't something like this where there are no signs and symptoms of illness, but low and behold he truly is sick.  Got him checked for flu and strep, both were negative.  Ears looked good.  Lungs were clear.  The doc said he just had a virus.  So we just get to wait around for it to depart.

The weekend was okay, then things started to get rough.  Around Tuesday morning both Brian and I agreed that something else was going on.  Multiple times he would just curl into the fetal position, which is not normal for him.  Remember, this kid has a great vocabulary, but can not say, "I'm sick.  I hurt.  I feel gross.  My tummy does not feel good." etc.  Plus, he doesn't feel pain like the rest of us.  All the detective work I was doing wasn't pulling up any definitive answers.  Time to go back to the doctor.

I get there and our lovely Nurse Practitioner, who is more like a family member at this point, checks him out.  I tell her that I suspect a kidney stone or a bowel obstruction.  What would cause random expressions of pain, without any other outside symptoms?  He is eating, drinking, peeing and pooping regularly.  No fever, no cough, the boy doesn't look or act sick 98% of the time.  Just increased seizures and occasionally curling up in a ball.  I tell her about a previous visit I had about a year ago where the g-tube specialist told me that kids with g-tubes can get backed up with stool, even if they are having bowel movements.  It seems like everything is normal, but they really are constipated.  He also has a genetic pre-dipostition to kidney stones.  We agree that we are not taking any chances and we need some diagnostic tests.  She does a Urine and a CBC in the office, which came back fine, but alas there is no CT, x-ray, etc available there.

Off to the ER we go!  There was some miscommunication about what we were really there for and I expected the usual rigamaroll that comes with an ER visit, but this was just insane.  We were there for.ev.er.  I am usually such a fan of this hospital.

I understand that it is hard to believe me at first glance when I say my son is sick and not acting like himself, when he is running around the room and smiling.  Sure, lady.  He looks REAL sick.  So they waste a ton of time just trying to decide if I am crazy.  Then they decide to go to the opposite end of the spectrum after talking to a doctor that we rarely see and is totally on my bad list.  They order him off of his current medication, want to change it to something that we have already tried and failed, and want to order an MRI...of his head.  Because that makes sense!  We come in for abdominal pain and they want to admit him for two days and do a long, sedated procedure for his brain?  Mercy.  I am not here for seizure management.  He hasn't smacked his head...why are you ordering this?

After a few hours and explaining myself thouroughly to multiple people, they begin to understand why I don't want an MRI.  Once again, I was glad that I had listened at one of those millions of appointments.  Truly, Cole has only had one MRI and it was when he was 7 months old.  Things have totally changed since then.  I asked our neurologist if we should get an updated one.  He asked why.  I told him that we wanted to see if/how things had changed.  He then proceeded to ask me why I wanted to know.  Then, being the awesome doc that he is, told me that in the end it wouldn't change treatment. An MRI would show white matter loss, or a brain tumor.  Cole has Dravet, we know why he has seizures.  So, no brain tumor.  As for the white matter loss, it could totally be possible.  The kid has had thousands and thousands of seizures and episodes of hypoxia.  How would it change our treatment?  It really wouldn't.  Cole changes so fast, that we treat him in the present.  So, through that explanation I was educated/reaffirmed that sometimes you don't need to do major tests just for the sake of doing tests.  I already knew this based on my work history and my insurance bills, but I never thought in a million years a neurologist of all people would say that I shouldn't have an MRI for my child, who has a rare brain issue.  Good guy.  ANYWAY....

I let the ER staff (nicely) know that we are not here for an MRI.  We are not here to be admitted for "observation".  We want to check out his abdomen.  Can we do something about that?  They suggest a CT.  okay....Why are we doing a CT that has a lot of radiation and takes forever, when we could just do an abdominal x-ray and an ultrasound?  At this point, someone has finally listened to me and called Dr Miller.  Who, thank the Lord, told the doctor to listen to me because I know what I am talking about.  So-we get the x-ray and ultrasound.  Low and behold, the child has a bunch of old, backed up stool just sitting in his colon.  Ever been constipated?  Yeah, it stinks.  Times that by 10.  We would have never known unless we took him in.  Man, this child continues to amaze/confuse me.  Absolutely nothing but mommy instinct pointed to this problem.  I am just glad that it had not turned into a full obstruction and it was easily treatable.  Plus, Slugger got to feel like a movie star.  Without fail, every nurse on staff always visits our room when we come into the ER.  They love Slugger.

So, Cole has been drinking lots of PlumSmart and getting Milk of Magnesia.  He does not feel as crappy.  We will just add this to the list of crazy phenomenons.  However, the road is still rough.

Glad I listened to the g-tube nurse, glad I listened to the neuro when he told me that it wasn't necessary to do an MRI on Cole at this point.  Unless he has had head trauma or something, but not for a bellyache.  Otherwise we could still be at the hospital, admitted for nonsense and possibly catching whatever germs are floating around the building.

Cole is still not himself.  In fact, today we wondered if we were going to make another trip to the hospital.  This time for signs of low blood pressure.  The guessing continues.

In between playing detective we have had fun this week.  Valentines was always a big deal at my house growing up.  We declared the entire week up to it, "Love Week".  So for Love Week I have been making lots of heart shaped food, we got small presents, the house is decorated (unlike Christmas) and we have been enjoying Cole's excitement.  He was thrilled with the Valentines he brought home from school and little art projects throughout the week.  When he is asked who his Valentine is, he says, "Daddy".  BIG surprise ;)

More About Give Kids The World Village

Here is another great video about Give Kids The World Village. It shows just a tidbit of what we are going to be able to experience on Cole's special Wish Trip.

GKTW hosts children from multiple wish granting organizations worldwide, but Make A Wish is the main organization that sends kids here.  An entire resort specially dedicated to children who have life threatening illnesses, who been granted a special trip of a lifetime.

A whole week with passes to different theme parks, water parks and anything else Cole can dream of.  Even sugar free, dairy free ice cream for breakfast!  I have already made a tentative itinerary based on what we think HE is going to want to do and let me tell you...it is going to be F.U.N.

Random Things About Me

Instagram was having this little diddy for a couple of weeks where people posted random things about themselves.

Since it has been so heavy around here, let's lighten it up with some random things about moi.

-I think I look like a dork in "serious" pictures.  Case in point.

-I have probably over 50 pairs of shoes.  3/4 of those were purchased by my husband.  Even though I like shoes, I actually prefer to be barefoot.

-I would rather throw up than exercise.  That's how much I hate it.  I do it anyway, but I don't have to like it and endorphins are seriously something someone made up.

-I have visions of my youngest sister and I actually living in the same location; so we can start a catering and wedding cake business.  Oh yes, you better believe I have designed the stationary.

-My favorite place to be right now is in my bed.

-My biggest pet peeve is someone promising they will do something for me, and then they don't.  Also the reverse.  I can't stand myself when I have promised someone something and then I can't follow through.

-I redecorate parts of my house, in my head, at least once a day.

-It was my biggest ambition in life for a long time to be a Marine Biologist Veterinarian.  I cry every time I go to Sea World.

-In a perfect world, I would live on a farm near the mountains and the ocean.

-I am a fast reader and can plow through a book really quick.  My parents would catch me awake in the middle of the night because I had to finish "Just one more chapter".

Feel enlightened? ;)

Mixologist

It is no secret for those who know me that I love beverages.  I have an entire board on Pintrest dedicated to them.  It's probably a really good thing that I don't drink alcohol, because I would probably spend a good chunk of money on fruity drinks :)  Cocktails turn into mocktails around here, but there is still something satisfying about mixing flavors to come up with a new wonderful combination.  For example, last night I made a strawberry, pineapple, coconut, vanilla, Sprite concoction that was awesome!  I think I would make a pretty good bar tender.  I could probably get really into Mixology.

When you are mixing and matching medications, it has been termed "cocktails" just like those fruity drinks with a toothpick.

It seems like through our constant tweaking lately we have found the perfect combination to buy us a short break.  It is not a quick fix, but you don't stay drunk for days from one glass of wine.  In theory, anti-epileptic drugs work on the brain like alcohol.  It makes it sleepy, slows it down so that it can't fire off and have as many seizures.  When Cole's brain is over-active, we have found (for now) that giving him a specific cocktail will buy us at least 8 hours without a tonic clonic.  Now this is not something that we can do every day, but it has sure proven useful in the last two months.

Double dose of Keppra-an AED that he has been on for a long time.
5 mg of Diazepam (Valium)-a benzodiazepene
and 7.5 mL of IB Proufen-an anti-inflammatory

It doesn't matter if he has a fever or not.  We have tried these things separately also as a form of rescue medication.  Right now, it only works when you do all three together.  Strange, I know.  Weirder things have happened.

Rush

My emotions are all over the place.

Cole has been granted a wish from Make A Wish!  Truly, it has been a long journey.

I first applied for Make A Wish when we lived in Utah.  Things were crazy, but my dear friend inspired me.  Her daughter passed away just weeks before they got the news that she could be a Wish Kid.  She told me that she would give anything to take that special trip with her daughter; and I was introduced to Give Kids The World Village.

I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village.  She told me more about it and I looked it up online when I got home that night.  Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online.  Give Kids The World Village was so magical.  I wanted to take Cole there.  It was a place where no one is different, and dreams come true.  After a couple of weeks without hearing anything, I called the office.  I was told that they were waiting on paperwork from Cole's doctor.  I never heard back.

We moved shortly afterwards and it was one of the last things from my mind.  I was so busy trying to get everything else into order.  However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor.  Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish.  I was livid.  However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way.  He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip.  Hindsight truly is 20/20.  I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.

Fast forward.  Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc.  Life was constant chaos.  By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village.  December 2012, the darkest of times, rolled around and I remembered my sweet friend.  Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family.  I felt it was time to apply.

My doctor was texting me every day at this point.  I gave her a heads up that she was going to be contacted.  Then crazy stuff started happening.

She spent over an hour on the phone with the foundation.  She filled out tons of paperwork.  Then more paperwork.  SHE made the decision and told the foundation that haste was necessary.  Sometimes it can take up to 18 months to grant a wish.  I didn't mention anything to her about going right away.  SHE asked for rush status.  This is where a wish can be granted within 24 hours if necessary.

When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time.  Someone who didn't even know us, agreed that things were so bad that there was to be no delay.  I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes.  Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories.  I knew that a wish was possible, but rush status is for kids for whom death is imminent.  Right?  Once again I had to face reality that things truly are harrowing around here.  However, light entered and gratitude overwhelmed me.  Make A Wish has made it possible for our dreams to come true.  For Cole's dreams to come true.

The process has been so smooth and our wish granters are awesome.  One is a big burly guy who has been a volunteer for 10 years.  He said he has only cried once before.  When he read Cole's application, he cried for the second time.

Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted.  The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust.  His story of survival is inspiring.  He lost everything, thought he was going to die, but beat the odds.  He also ended up finding his sister who was sent to another camp.  When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning.  He wanted to give hope.  Even if it was just for a week.  More than 80% of Make A Wish, Wish Kids, actually survive to adulthood.  Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it.  Some of them don't even get to experience their wish.  But GKTW is a place of magic, hope and peace.  A resort that is totally dedicated to granting wishes for kids.  We are so honored to become a part of this special family.  The countdown has begun and I have been preparing Cole a little bit every day.  From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey.  This little boy deserves everything.  Make A Wish is helping us to make it happen.  A whole week dedicated to doing whatever he wants.  No doctors, no therapy, just fun.

Watch this video and be inspired, like I am.  Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day.  I can't wait to hear the constant barrage of giggles when we go on our wish trip.  Thank you, Make A Wish of Mid-Atlantic.  "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.

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.