Wednesday, December 19, 2012

The Walk

December 15, 2012 Road to our home Show Low, AZ

December 13th, 2012 we loaded the kids in the car for another trip to Phoenix.  My brother Kevin and his wife had no idea when they moved here 1 year ago that they would have such frequent house guests.  My kids get a long well with their kids and love going to see their cousins.  This makes the trips a lot easier.

We had our final scheduled doctor's appointment for the year.  Seth was scheduled for testing on his optic nerve and retina at Phoenix Children's Hospital on December 14th.  His pediatric ophthalmologist, Dr. Leverant has consistently stated his optic nerve on his right eye looks pale.  She wanted further testing.  He had an ERG (electrorinography) and VEP (visual evoked potential).  Essentially, Seth had to sit completely still with electrodes attached to his scalp and face while bright lights were flashed into his eyes.

He was such a trooper.  He did remarkably well considering he usually can't sit still longer than a few minutes.  He engaged in conversation with the technician  and by the end of the testing had completely enamored her.  His smile, kindness, complimentary spirit and happiness had won her over.  Seth told the technician how much he "loved his aunt Catherine" and how much he "loved going to her house", spoke about their cat, sweeping her floors and her Christmas trees.  Seth then asked her: "are you ready for Christmas?"  It was almost 3 hours of this sweetness.  I have told Becky that sometimes I am envious that she gets to be with him so much and experience his sweet personality.

I volunteered to take Seth to the hospital and wait with him.  The other option was to take my other kids Christmas shopping at the mall.  This was a no brainer for me.  The results were normal.    After the testing was done, Seth and I went and had lunch in the hospital cafeteira.  I'm not sure which one I prefer--McDonald's Happy Meal or hospital food.  While we were there, Seth made sure he was able to speak with as many people possible--interviewing doctors, nurses, and other patients.  

The following day was the highly anticipated Arizona Mito Walk.  The weather in Phoenix was terrible, but we had so many people come out and support us.  Becky and I were deeply moved by those who took the time to support us.  There were 40 people that signed up to walk with our team.    This journey can be a lonely cold walk down a road and can elicit fear in me.   In reality, what this Walk and response to our video and blog has done has made us realize that we are not alone.  We have so many good people that have helped us along and who are willing to support us in different ways.

So even though th AZ Mito Walk is over, our family will continue to walk down these roads that we have not ventured on before, knowing so many of you are with us!

AZ Mito Walk:  Team Mito Warriors 

Article About Belnap Family in TGen Today

A few months ago, Dr. Narayanan asked us if we would share our story with TGen as they launched a new foundation called Center for Rare Childhood Disorders.   TGen is the company that is studying our family's genome searching for the mutated genes causing Mitochondrial Disease.

We said we would love to help in any way possible. In November, our family traveled again to Phoenix to be interviewed and photographed. We spent the afternoon touring the company, doing the interview, and getting our pictures taken.

The article was published recently in TGen Today.  I have grown to love this company! It has taken the data from the Human Genome Project and applied it to saving lives. I encourage anyone to take a look at this remarkable company. I have decided to post the article on my blog.

Monday, December 3, 2012

Let's Walk!

If a pictures says a thousand words, then a video says...a story.

Seth showing how old he is with his fingers 
I write this post as Seth sits in my lap recovering from croup and after about 45 minutes of respiratory distress last night.  He is feeble today, but improving.  We had a scare last night similar to when he choked on a coin as I wrote about in my post Premonition and Perturbation.

I will briefly mention this scare because it relates to my overall goal of raising awareness.  Last night, Becky, Sydney, Seth, and I were driving one of Sydney's friends home around 10pm.  We were, in what most people would call "the middle of nowhere" Concho, AZ, and at least 30 minutes from any hospital when suddenly, Seth started having a difficult time breathing.  He has had a cold for the past few days and yesterday, he started to loose his voice and cough.  After his symptoms started, I took him outside of the car to allow him to breath some cold air.  This helped some but not enough.  I got back in the car and I drove, faster than I should have, to the Emergency Room in Show Low, AZ.

As I explained to the triage nurse, my son has Leigh's Disease, a type of Mitochondrial Disease...  These upper airway restrictive illnesses can kill any child, but my son is more susceptible.  He already struggles for oxygen.

"Well, his oxygen saturation is 97%."  Yes, but look at his respiratory rate!  Look at his intercostal and supraclavicular retractions!  Look how fatigued and pale he looks!  Listen, I'm a physician assistant and I know my son!  Can you give him some oxygen!  It was amazing how soon he started acting like Seth again after he received oxygen.

Just ask any parents who have children with Mitochondrial Disease who have had to take their kids to the Emergency Room.  Many times, us parents end up educating the medical staff about Mitochondrial Disease.

Luckily, I knew the doctors and the physician assistant who were on shift at the emergency department.  After briefly explaining his Leigh like Mitochondrial Disease to them, their response was immediately turned to action: "can he have dexamethasone?"  Yes.  He can have all the medications used to treat croup.  "We'll get x-rays of his chest and soft tissue of the neck.  Is there anything else we should be doing?"

I am not faulting or pointing fingers.  I don't do that.  The hospital in Show Low is an excellent hospital.  The triage nurse was a great nurse doing her job.  I have one objective: to raise awareness of MITOCHONDRIAL DISEASE!!!  Had I gone up to the front window of any ER and said "My son is having an asthma attack" I would not have had to fight as much for him.

Seth & Becky in the emergency room

It's Time to Walk!!!

I am very thankful for everyone who has watched our video called Our Mitochondrial Disease Journey that I posted on YouTube.  As of today, there have been over 750 views.

The day after I posted this video, our family was sitting at the dinner table discussing the day and the video.  Sierra was making fun of herself and everyone else.  The picture that I have as a thumbnail for the video and is shown below says a thousand words.  Sierra stated how the 2 of the 5 pictures of her in the video were not very favorable towards her.  "My eyes are closed and my knee is out in one picture.  In the other picture, I'm flexing my muscles...with that big rock (Half Dome) in the background".

Sydney looks as if she either has sand down her pants from Seth and his shovel or was just stung by a jellyfish.  Seth, well if you know Seth, he is just as happy sitting in his car seat for the 10 hour drive to Monterey, California as he is playing in the sand.  Joy, elation, jubilant are just some of the words to describe him.

The best was Sierra making fun of Spencer.  "Spencer is standing there in front of everyone, flexing his muscles, showing off, and he has sand all over him.  He even has sand on his face and in his teeth" (actually, just his braces, not really sand).

Beaches of Monterey, California Summer 2012

Spencer's comeback line was classic Spencer. "Well Sierra, I just finished making out with a mermaid".  Quick and comical which reminds me of his Grandpa Warnick and Becky's and my friend from high school Paul Smith.

Seth was walking around the house for the first 2 days after I posted the video watching it on my iPad multiple times like he was watching a Barney video (maybe that is why there is over 700 views).  Sydney, in her innocent way, was just happy to be on the internet.  Spencer was not very happy to have so much attention brought to himself.

I am excited that so many people have watched this video and have looked at this blog.  Last month, over 600 people looked at my blog.  I am not looking for people to feel sorry for me and my family. That provides no benefit.  I am looking to raise awareness of a disease that is more common than childhood cancer!  I want better treatment options and I want to find a cure.  My hope is that maybe a few more people are now aware of this disease; aware of how it effects people and families.  Aware that there are faces to the thousands of people who suffer from Mitochondrial Disease.

This disease has transformed my life in a way that is not optimal.  My thought processes, daily routine, future plans all revolve around this disease.  So...let's walk!  It is time for me to turn my sadness of how this disease has transformed my life and turn those stagnant emotions into action.  Let's walk for those who can't!  Let's walk in memory of those who have died from this disease.  Yes, people of Arizona and around the world, let's walk!  I'm tired of hearing story after story of this disease killing children.  I'm sick of this disease being underfunded and under recognized for what it is and how it is inter-related to so many other diseases. Let's walk for those...damn it...let's just walk!

Arizona Mito Walk

December 15, 2012 in Phoenix, Arizona