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