Showing posts with label Niki. Show all posts
Showing posts with label Niki. Show all posts

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

SEPTEMBER
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

OCTOBER
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

NOVEMBER
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

DECEMBER
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

MAY
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

JUNE
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

JULY
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

AUGUST
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

JANUARY
We start off the year in Utah.  After a series of Rocephin shots and a major miracle, we get to go home for Christmas.  Cole enjoyed sledding in Great Grandma's yard in between seizures.
Had our traditional fondue party.  Got to have lunch with some of my Tiger Moms.  We went bowling for Cole's birthday at least 3 separate times.
Had Snowquester.  Frontal Lobe Nocturnal Seizures are in full force.  None of us are sleeping.   Found out Cole was accepted for Make A Wish with Rush Status.  Total Major Seizure Count (this is mainly tonic clonic, drop in O2, convulsion, not nocturnal): 22

FEBRUARY
Started the second Gourmet Club season.  We start a long journey with Cole's bowels and end up in the hospital, twice for backed up stool.
Found our awesome Gastro, who in this small world went to med school with my cousin and used to live down the street from us in Utah.  Who would have thought?!  Had a Favorite Things Party, I can't help it-I love excuses to party!  Had a major friendship break up.  I don't think we talk enough about how this can impact us.  I liked this point of view.  Total Major Seizure Count: 23

MARCH
Took Cole to see the Sea World exhibit in DC in anticipation for Make A Wish.  Started a fitness competition with friends.  I start going bald.
Feeling very unwell.  Initial diagnosis is Lupus.   Went to Miami Childrens.  More tweaking of the meds.  Always tweaking.  Purple Day, we love it!  Had some of our wonderful friends come and stay with us for Easter.  Total Major Seizure Count: 33


APRIL
Went downtown to see the cherry blossoms for real.
First time we had just barely moved, Cole was in the hospital downtown and I was literally throwing up in the car as we headed home after discharge.  They were pretty through the window!  Second time, we had crazy weather and the bloom only lasted for 3 days, so by the time I made arrangements to get down there it was over.  My diagnosis has been changed to possible cancer.  Then back to Lupus.  Had a milkshake that changed my life.  Make A Wish.
 This deserves multiple posts.  It was such a bittersweet experience that we will remember for the rest of eternity.  Not sure when the documenting will actually happen.  The scrapbook that Crops Of Luv made for us is something that I will treasure forever.  I turned a year older.  Total Major Seizure Count: 31 (breaks record for most in one day with 6).

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

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.

Wednesday, April 17, 2013

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 ;)

Tuesday, February 5, 2013

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? ;)

Monday, December 3, 2012

Evacuate

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

We. are. alive.

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

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

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

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

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

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

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

Happy Holidays,
NIK

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

Wednesday, August 22, 2012

IRL

Welcome to the first in a series of VERY picture heavy posts.It is always great to meet with my Dravet friends "In Real Life". Some have been friends for years, others this is our first interaction.
All are special. These are some of the people who can read me like a book.
Some of the people who cheer/roar for us when we accomplish even minor things.
Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.Some come from far away places-We had people from Australia, Austria, Ireland, Israel, Mexico, Cyprus, England, Africa, a crazy big group from Canada and other countries represented this year!
Some are from your backyard. Some are so sweet that you want to pack them up and take them home with you.
The children especially leave huge marks on your heart. I love these two.
Some have an alarming amount in common with you.
But with all of them...you feel a whole lot of love. This is my favorite part of the conference. Making connections. The internet is awesome, but I will always prefer to "friend" someone IRL.

 
Photos by Capture Me Candid

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