Tuesday, December 20, 2011

Back to where we started and gratitude

We went to our final doctor's appointment for the year.  This one was in Flagstaff.  We went to see Dr. Rockow, Seth and Sydney's cardiologist.  Mitochondrial disease is a multisystem disease process.  The main disease process his neurologists are concerned about is cardiomyopathy--pathologic enlargement of the heart.

As Becky and I drove the 2.5 hours to the appointment, we were reflecting that it was around this time of the year 3 years ago that this all began.  It was with Dr. Rockow when he noted cardiac conduction abnormalities with Sydney (Wolfe Parkinson White Syndrome) and he wanted to check Seth at the same time.  He had an abnormal ECG but normal echocardiogram.  He then recommended that Seth have a detailed endocrine/metabolic and genetic workup.  We thanked Dr. Rockow for his help.

Ever since Seth had nerve conduction testing, where they stuck small needles in his large muscles, he gets really scared of doctor's appointments.  He freaks out when they put the pulse oximeter on him.  He freaks out when they put electrodes on his chest.  He freaks out when he gets his blood pressure checked.  I can't blame him.  I've lost track how many doctor's appointments we've had.  He is such a trooper through all of this.

 Dr. Rockow reported that Seth's heart is placed in the center of his chest instead of the normal left side, but he didn't think this was a problem.  His ECG and echocardiogram haven't changed.  This is good news.

In May of 2010, (before Sydney had the diagnosis of mitochondrial disease) Sydney was preparing and planning on going on a multiday adventure with the youth in our church.  This was going to model some of the experiences of the Pioneers as the made the trek west.  They were planning on pulling handcarts, have minimal food and water, poor sleeping conditions, and exposed to the high temperatures of the Summer.  One week before this adventure, Sydney fell down the stairs and broke her foot and had to have surgery.  We were all so disappointed that she could not go on this adventure.  As we look back, this accident was a major blessing!  Had Sydney gone on that excursion, it would have been an absolute disaster with potential fatal consequences.  Did God intervene?

As we close this year, I need to express gratitude.  The journey continues and this year has brought us some tough times and some good times.  I am most thankful for my wife Becky who has been the ultimate co-captain on this voyage.

I am thankful for friends who listen and care.  I am thankful for my parents and my in-laws who have shared our burden.  I am thankful for my health and job that allows me to provide for my family.  I am thankful for co-workers and my boss who have had to deal with me and have been flexible.  I am thankful for my other family members who have been with us on this journey every step of the way.

I am thankful for my children.  Each one of them are unique and dear to me.  My two mito-kids,  you have endured so much.  You don't fully understand what is going on.  Life is not fair!  Unfortunately, you have a disease that we don't know much about and how to best treat.  As your parents, we promise to do all we can to get you the best medical help available. 

My two other children, you have watched this whole process unfold.  You have been scared, but you have replaced your fear with faith.  Your example of faith has been a motivating factor for me to continue on and hold on to the belief that our Heavenly Father is keenly aware of our family. 

As I say prayers at night with my youngest daughter, I am amazed at the thoughtfulness of her prayers.  She rarely prays for herself.  She prays for so many people and expresses gratitude for the earth, family, animals, and friends.  She teaches me many things by her example.

Last, but not least, I am thankful for God.  This journey has raised many questions for me.  I would be ignorant if I did not acknowledge the many tender mercies that God has given us along the way.  I want to close this post with one of my favorite poems by William Ernest Henley.  I hope you all have a wonderful Christmas.


Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

Monday, December 5, 2011

God, friends, and family

We had another set of appointments for Seth and Sydney over the last 2 weeks.  The pulmonologist went well with normal lung functions.  They will do overnight oximetry to see if their oxygen levels drop significantly.  We also saw Dr. Prigatano, a neuropsychologist.  He gave us some shocking news about our oldest daughter Sydney.  He states she will never be able to drive and that she will need assistance throughout her entire life.  Becky and I had begun to realize as she got older that she has a hard time socially, emotionally, and mentally, but we didn't realize it was this bad.  This changes everything.  You expect your children to grow up, go to college, get married, and have a life of their own.  You hope you have taught them well and given them a solid foundation for their lives.  You don't plan for this.

We also met again with Dr. Narayanan, their local neurologist.  He is such a kind man.  After our appointment, we were talking and he said, I feel like I'm not doing very much for your children.  I was somewhat shocked by his statement.  I then said to him, do you want to know how we feel?  We feel like you have saved our children's lives!  Tears started to swell up in my eyes as I said this and it felt like we connected to each other spirit to spirit.  There was a long pause and tears began to swell up in his eyes.  He then said thank you.

I explained to him I will never forget when we first met him and the whole neurogenetic team at St. Joseph's Hospital.  We were so excited to finally get some answers from some of the best doctors in the country.  You walked in looked at me, Becky, and Seth and with humility said, "I have looked at your son's MRI and have had all of the pediatric neurologist look at it too.  I have no idea what is wrong with your son.  No one has ever seen this before".  He then went on to say we will find out what is wrong with your son.  He did what he needed to do.  He went the extra mile.  He referred us to Dr. Shoffner in Atlanta who finally made the diagnosis.

This journey has been the most difficult experience I have ever been through.  I so much want to turn to God for help, but I lack faith.  I feel like I have been burned by God before when I have turned things over to him.  What do I expect God to do?  Do I expect him to make everyday all happy and glorious?  Do I expect him to completely take away my pain?  Do I expect that there be no suffering in this world?  Bottom line, I don't know what I expect.

I am thankful for friends, family, and excellent doctors that have helped us along the way.  I do know there are good people in this world.  I can always tell when someone is truly interested in another human being.  I am so thankful for people like this. 
I have been so touched by the outpouring of love by those who are directly involved in Seth's care.  I have seen many of his teachers at the clinic where I work.  They tell me how his smile makes them feel good.  They tell me that they can be having a bad day and they see Seth, and he brightens their day.  I am amazed how much these people truly love my son.  His bus driver saw me today and told me they don't let anyone else sit in his seat.  They don't want another sick or potential sick child to sit where he will be sitting.  They use antimicrobial agents to clean his seat frequently.  Jennifer, Seth's bus driver, also stated she has multiple people praying for him at her church and her family around the country.
I have a dear friend Rusty who has gone above and beyond what I would have expected anyone to do.  He seems to be in touch with our needs and has given financially to help with enormous medical bills.  Rusty is one of those guys you know truly cares.  I have felt his sincere empathy.  He has been a good friend to have a long this journey.
I have family who have made several trips from Utah to Arizona to watch our kids while we travel to Atlanta.  We have friends here who have watched our children overnight as we have gone to extended appointments in Phoenix.  I have co-workers and church members who have helped.
Most of all, I am thankful for Becky, my wife.  She has been through this journey and has amazing strength and faith in God.  I love you.
Are we alone in this battle?  Has God abanoned us on this journey?  I don't fully understand how God works.  It seems like I have completely revisisted God through all of this and might have answered some of my own questions that I posed.
Until next time, I will continue to be a dad to my two special mito kids and two special other kids.

 Seth getting his resting metabolic rate tested.
 Sydney getting her resting metabolic rate tested.
These are some photos from our trip to Atlanta October 2011