Saturday, February 16, 2013

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  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 ;)

Thursday, February 7, 2013

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 is going to be F.U.N.

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, February 4, 2013


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.

Sunday, February 3, 2013


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 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.

Photos by Capture Me Candid