Friday, November 7, 2014

Brains Are Equally As Important As Boobs

*cough*  Um, hey there!

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

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

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

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

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

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

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

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

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

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

Tuesday, March 4, 2014

Year In Review-Part 3

This is part of a series catching up on 2013!  See the other posts here:  Part 1 and Part 2

Cole doesn't start school on time.  He is just too unstable.  We see a Integrated Medicine doctor.  An MD, that also practices natural medicine.  She has a theory about my adrenal insufficiency.  Cole finally makes it to school.
 We LOVE his team!  We totally know what it is like to not have a support system at school and consider ourselves so incredibly lucky to have the amazing people here.  He really struggles and has to start wearing a bib in September that has to be changed constantly because of the drool.
 I even send him to school in his wheelchair when he can not hold up his head or walk.
 Has not been eating at all for a few months and has been solely tube fed.  Sometimes it is nice to have breakfast where super hero gear is mandatory.
Made a custom letterpress invitation for Gourmet Club.  Find out I need double knee replacements.  Start 6 weeks of collagen injections under my kneecaps.  I am a huge fan of Lidoderm patches, even if you run out of regular Co Flex and need the dinosaurs to keep them on ;)
 We continue to explore treatments for Cole.  He is really struggling.
 Government Shutdown starts.  Total Major Seizure Count: 273

I am asked to give a class on Style for a group of young women.
 I go to New York for a conference.  We get adorable family pictures taken by my talented friend.  Celebrate Slugger's birthday with a trip to Cox Farms.
 The light goes out of Cole's eyes and he is zoned out for over a week.
 I host Eat, Drink and Be Scary!  Had so much fun with my theme this year.  Glowing green ice cubes, dry ice, all sorts of fun and fantastic food.
 Cole pulls out his g-tube.  That makes my heart race more than any seizure nowadays.  Cole is on antibiotics.  School is like a petri dish.  I break my foot, nothing they can do about it.  It's Diffendoofer Day at school.  I take Cole to the zoo.  Decide to take Cole off of all benzodiazepines.  He is a full blown drug addict.  His body constantly searches for the next "hit" and ends up having more seizures because of it.  Long story short, rehab at home is not fun.  Realization that the hospital just can not help us any more is difficult.  I start seeing a doctor about losing my hearing and Tinnitus.  I will probably write more about that later, maybe...don't hold your breath :)  We are Super Heroes for Halloween.
 Meet Captain Canine, Super Cole, Tiger Mom and Dad...who doesn't need a secret identity.  Total Major Seizure Count: 200

Fall weather is perfect.  The leaves are amazing.  Cole gets sick again.  More antibiotics.  We start dealing with thrush as a side effect of not eating and drinking by mouth.  We go to the Newseum.  Fall baking is in full force.  Cole starts having cycles of "good days" and "bad days".  6-9 days that are almost seizure free, then 3-4 bad days where he can have 60+ major tonic clonic seizures in one day.
 We are just grateful.  Even though the bad days are really bad.  The good days are good and he can recover.  Before, he was having bad days, every day and was regressing because his brain and body never had a break.  Cole stops having nocturnal seizures every night.  Only when he is in "cycle".  After 7 months of fighting with Medicaid, we get 16 hours a day of nursing.  Totally changes our lives, since we can now have night nurses.  We are getting to see glimpses of our little boy coming back.
   Total Major Seizure Count: 257

We have ice storms and more snow than we know what to do with.  DC seems to panic and shut down every single time there is a storm.  I get cortisone shots in both knees so I can play tourist with Grandma and Grandpa when they come for an early Christmas.  We eat a lot.
 Don't get to go home for Thanksgiving, Christmas, New Years, birthdays, baptisms or Grandma and Grandpa's LDS mission farewell.  However, Christmas Day is fantastic for Cole and it is the first holiday ever in 6 years that he has enjoyed and was able to participate in traditions.  Best day EVER!
 Mom gets hearing aids for Christmas.  They are actually quite small and blend easily.  You can see here where I have a top knot, you can still hardly tell they are there.
 Again, I will probably, maybe write about the emotions connected to this.  Total Major Seizure Count: 204

All in all, we had an absolute whirlwind year.  This is the major Reader's Digest compact version, with a lot of holes.  Sometimes it is amazing to take a step back and realize how much can change in twelve months.  All that matters at the end of the day is we are trying our best.  I still get to snuggle this little guy who is not so little any more!  He is a true warrior and makes me want to keep fighting, even when it seems like I don't have the strength.

Monday, March 3, 2014

Year In Review Part 2

This is part of a series covering 2013!  See Part One here

Went on the Embassy Tours.  One of the coolest things I have ever done!
Cole is super sick.  Attended two Derby parties, hooray for hats!  End up in the PICU.
Find out that one of our Dravet friends that we know personally earned her wings.
Did a lot of Zumba with friends. Got a chunk surgically taken out of my scalp.
End up in the PICU, again and then again.  We were basically in the hospital for three weeks in a row with only a few days break in between admits.  Total Major Seizure Count: 54

Went downtown with some great friends.  Started a major obsession with the Library of Congress.  Found out I don't have Lupus, I have Fibromyalgia and Osteoarthritis.  Say good-bye to some of our dear friends when they move.  Why does everyone around here move constantly?!  Seizure control is null and void.  Having up to 16 to 20 TC's a day.
 Get pretty desperate and almost Life Flight Cole to Miami.  Instead, we take a risk, drug him up, pack our bags and drive to Florida.
 Stay inpatient for a week and do a major wean of Phenobarbitol while we are there.
 Total Major Seizure Count: 95

By divine intervention, Brian and Niki get to make it to Hawaii on a trip that has been planned for 6 months with her family.
There is a ratio of 3 adults to 1 Cole while we are gone.  7 Nurses switching off around the clock and help from friends who are salt of the earth.  It was Brian's first trip and Niki's return to "Home" where she used to live while going to school.  We jump off a 45 foot waterfall and try to have a good time even though we are thoroughly burned out.  Niki got a baseline EEG since it had been 8 years.
Slugger goes to 4 Paws for Ability for some refresher training.  We ended up in the PICU, again, while he is gone.  Had a 2 hour status seizure.  We start importing Stiripentol from France since we have tried just about every thing else under the sun.  See the list.  Total Major Seizure Count: 244

We take Cole to Seattle Children's Hospital.
 He has 6 TC's before we leave, 1 at the gate, 10 in the air, 2 at the airport after we deplane and multiple after we left baggage claim.  One of the most stressful days of my life.  He has muscle biopsy surgery to determine he has a Mitochondrial disorder on top of Dravet Syndrome.
 Our summer vacation was flying across the country, having 9 Dr. appointments and 1 surgery in 4 different locations in 5 days.  We even have sleep studies in two different facilities on the same night.
Cole is so drugged from the Stiripentol that he is Zombie-like and he doesn't have a nocturnal seizure, like we had been experiencing every night for almost a year.  It always happens that way :)  My sleep study shows I am sleep deprived.  I paid money for that?!  LOL
 Have a pistachio macaron at Pikes Market that I will remember forever.  Get to see some of our great Dravet friends.  Cole is having 30 to 40 big tc's every day.  Went on a night tour of the monuments.  It was perfect, highly suggest it.  Had an overwhelming display of love from family with "Cole Is My Super Hero" as the theme for our annual reunion.  Total Major Seizure Count: 176

Sunday, March 2, 2014

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

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

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

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

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!

Tuesday, December 10, 2013


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.

Tuesday, July 30, 2013


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 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)
Versed-rescue (Buccal and Intranasal)
Diastat-rescue (rectal suppository and tablet)
Ketogenic Diet
Klonopin-rescue and daily
Low Glycemic Index Diet
Potassium Bromide
N-Acetyl Cyestine
Diazepam tablet-daily
Phenobarbitol-rescue and daily
*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
IB Proufen
Potassium Phosphate
Centrum Multi-vitamin
Nano VM Multi-vitamin
Vitamin D
Multivitamin Supplement (Carnation Instant Breakfast)
Magnesium Citrate

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

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

Neurology-6 different ones
Developmental Pediatrician
G-Tube Nurse Practicioner
Bone Health Specialist (Ortho)
Pediatric Dentist


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.

Monday, July 8, 2013

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.
Photos by Capture Me Candid