Dinner With Friends

Joe and I are super excited to be attending "Dinner with Friends" this Saturday!  By now you all know how much we value and love the Ronald McDonald House!  This special place is a tremendous asset to our community and we know first hand how their services bless families in crisis.

I encourage you to click on the event and scroll down to the bottom and simply read how this wonderful fundraiser came about.

Dinner with Friends

But before you go I want to share a little more about how the RMH has blessed our family.

While the RMH has 47 guestrooms that provide a "home away from home" for families like ours with a child in medical crisis, most people are unaware that they are not only for overnight guests!  The RMH also provides 3 FREE meals a day to any parent with a child admitted into Rady's Children's Hospital.  How amazing is that!  Whether you are there for a day, a week, a month, or longer they will take care of all your meal needs!

Our family was so blessed by these meals that we have gone back a few times each year to provide them for others.  On some of the hardest days of my life a complete stranger took care of my basic needs.  They gave their time and money to feed me...how beautiful is that?  There were days when I entered the house so broken and scared.  There were times when it was hard to look those serving me in the eye for fear of completely falling apart and there were times when I wanted to make a connection and share our story.  But each day a different group of volunteers took care of me and I find so much beauty in their service.

So please do me a favor...head over to the site above and read about how these two guys, Carlos & Matt, began this wonderful fundraiser benefiting our families "Home Away from Home".

If you would like to attend the event...great!  Joe and I will be there and even get to share a few minutes of our story!  If you can't make the event but would like to contribute any amount that is wonderful!  I usually get around 100 hits on each post so if everyone who read this blog donated even $5 we could help support this fundraiser and raise $500!  And lastly is you could share this event and challenge on your Facebook page we can spread the word to others who may be interested and just need an invitation!

The Ronald McDonald House has seen our family through 2 open heart surgeries, a cardiac catheterization, an oral surgery, and 2 unplanned hospitalizations.  And while I would love to remain on the volunteer side of the counter, I know with Stephen's 3rd surgery looming that we will soon find ourselves in line to receive again.  It is a painful place to be but I am grateful to know that when the times comes we will be well taken care of.

Thank you all for continued prayers for our precious son and thank you for letting me blab over and over about the Ronald McDonald House and the special place it has in our hearts =)

With Much Love & Gratitude,

Kim

Cirque du Romp

Saturday night Joe and I had the honor to speak at the 2014 Cirque du Romp supporting the Ronald McDonald House in San Diego...our "home away from home".   It was an INCREDIBLE evening! Hands down the best party (besides my wedding) that I have ever been to!

For 5 brief minutes we got to share our story to a room of over 400 of "San Diego's leading corporate and community philanthropists".   Wow...what an experience!

The event was located at a private country club in La Jolla. The night started with appetizers in and outside the clubhouse.  It was a time for mingling and silent auction bidding.  We were nervous, and slightly out of place...but hey we did our best to fit in ;)

We were then escorted to the main tent by an awesome ringleader...he was hilarious!  The tent was beautifully decorated, the pictures don't do it justice, and our table was immaculately set with more silverware than I knew what to do with!  The evening started with various entertainment before the live auction during which time Steven Tyler came to join our table.  Kind of weird having a rock legend sitting across from you...but pretty cool =)  Joe and I were called backstage about halfway through the auction where people with way more money than us were bidding a whole bunch of it!  Backstage I was all nerves.  Im not a public speaker...not even close.   Joe and I said a quick prayer before walking up the stairs to the stage and well...God took it from there.  As nervous as I was before, I felt a peace on that stage and I know that God used our words to not only raise money for a worthy cause, but to touch hearts.  I was overwhelmed with emotion when toward the end of our speech the audience erupted into applause at hearing that "Stephen is now 2 1/2 years old".  It was incredible.

We were disappointed when we found out we were not allowed to mention "Christ" or "church" in our speech.  While I get it...it is such a vital part of the story (and our lives) that it is rather difficult to convey our true hope without it.  We had to stick with words like "clung to our faith" "blessed" "hope" etc.  When I shared that with Joe I remember thinking as much of a bummer it is, God is bigger than those words and He will shine through.  Imagine my surprise and delight when a woman came up to us after and stated just that!  She literally told us she could tell we were believers..."it just shined through".  Wow!  Praise God for that!   It was just another reminder of how big He is.  That no deletion of words can keep him from being shown.  I will always smile and chuckle to myself when I think back upon this.  The world can try...but He will always win.

After the speech so many amazing individuals came up to us through the night thanking us for our words and offering their prayers.  This was by far the best part.  Being able to freely share our true hope and joy with so many people was the highlight of the night for me.  We literally couldn't walk to get water or use the bathroom without being stopped and each time we got to share a little more with those who asked.  I am still in awe of all the wonderfulness of the night!   I seriously didn't want to leave!  And to top it off the doctor who delivered Stephen was there...it was icing on the cake to be able to thank him again for the part he played in bringing our sweet boy into the world!

Dr. Daneshmand

Directly after our speech was a paddle raise...yeah I had no clue what that was either.  Basically the ask "who here wants to donate $25,000," and you raise your number and give freely with nothing in return.  They went through various amounts and raised over $230,000 during the paddle raise...remarkable!!!!  I teared up.  I know firsthand how much that money blesses and supports families with children hospitalized during a medical crisis.  They might not have understood all of the good they were doing...but I sure did and it was truly touching to witness it.

Then came the main entertainment...Steven Tyler.  The dude is 66 years old and can still rock the house.  I was brought to the front row by one of the committee members and I have to say...it was pretty cool.   He played classic songs like "Dream On" "Cryin" and "Walk this Way" which you can't help but sing right along to.  (I was however completely embarrassed for all of the slightly crazy older women who were fawning over him, it was just weird, but aside from being creeped out by their advances at him it was pretty awesome).


All in all it was an incredible night.  Seriously amazing to see where God has brought us and how far Stephen's story has gone.  I pray that God will continue to use sinners like us to bring about His glory and that Stephen's story heart will continue to touch the hearts and lives of many.



I smiled this week when reading Ephesians 3:20-21

"Now to him who is able to do immeasurably more than all we ask or imagine, 

according to his power that is at work within us, to him be glory in the church and in 

Christ Jesus throughout all generations, for ever and ever! Amen"

The night we found out about Stephen I quite frankly asked God to not forget His promises and to "show up".  I was broken and scared and wanted to know that some good would come if our son was going to have to suffer.  Well, not only did He let me come to him honestly, but he exceeded all my expectations and has done immeasurably more than all I could have asked for or imagined. I am in awe of His work in our lives and I pray that we would continue to follow and trust in Him and that He would continue to make so much beauty come from something so painful.

Pray for us tomorrow as we have an interview with FOX 5 San Diego for the whole "Passing it On" campaign...seriously this is getting crazy big and awesome.  "Immeasurably more" that is my motto right now.  God is bigger than we imagine.  His ways are above our ways and His thoughts are above our thoughts.  His plans far exceed ours and I look forward to seeing where He takes all of this in the future!  

And again thank you for all of your continued prayers for Stephen and our family over the years.  I LOVE it when people tell me they still have the heart magnet on their fridge and they pray for Stephen.  Please know I have no doubt of the power of all of your prayers and through them all of this is made possible!!!!

Here are a few more pictures from the evening!

With Much Love,

Kim

"Passing it On" with Philip Rivers

I am so excited to share this campaign with you!!!  Back in April UT columnist (and friend) Kevin Acee wrote this article about our son Stephen and the Ronald McDonald House.  Sooo much has happened since then!

A few weeks ago our family had the opportunity to meet Philip Rivers for a video/photo shoot to launch this amazing campaign to support the Ronald McDonald House in San Diego!

Both Kevin and Philip will be donating $1 for every completed passing yard Rivers throws this season and they are asking others to join in with them!  Whether you donate $.10 a yard (like us!) or more, it will all go to a great cause!

The Ronald McDonald House (RMH) provided our family with a home away from home when Stephen was hospitalized during his first 2 open heart surgeries and will again be a place we will turn to in the near future.  While it offers a room and 3 meals a day for only $15 it is so much more than just a place to stay.  I wish everybody could experience the warmth and love the RMH has to offer.

Joe and I were already dreaming of ways to come back and serve during our first 26 night stay at the RMH when Stephen was born.  We were beyond grateful for the service, love and care they provided our family and before we even checked out we planned our return!  Within 2 months we brought our youth group to serve our first meal and have returned many times since for meals, birthday parties and the Easter carnival Kevin Acee was a part of.

Needless to say I am amazed at what has transpired through our love for this house.   But it goes deeper.  Being a part of something so big brings me back.  It brings me back to my bedroom the night we found out about Stephen's heart.  After crying until I had no more tears...and then crying some more Joe and I made a promise to each other and to God that we were going to remain faithful and trust in Him.  We knew that night we could choose hope or despair...we chose hope.  I remember frankly speaking to God and saying "You better do your part"  If Stephen was going to suffer, as far as I was concerned, good had better come from it!  I knew all of His promises and I knew good could and would come from this if we followed Him and didn't get in the way.  So that night I promised to do my part and asked God to show up and do his...and boy has he!

Never in my wildest dreams would I have imagined all that God had in store.  He has worked in such incredible and unforeseeable ways... and really why would I have excepted anything less?  I was hoping that at least 1 other life would have been touched by our son's story, and instead thousands have read about it.  God is so good and so much bigger and mightier than I often realize.  He has had an amazing plan all along and I am in awe of how he has used our pain to bring so much joy!

That is why this campaign is so close to my heart.  It is another glimpse of how God has and is using Stephen's special heart to touch the world.  It brings me great joy.  It is beautiful.

So please take a minute to read this latest article...it is another little glimpse into our reality.

and then check out the Website here Philip Rivers' Passing it On... it has an incredible video of Philip Rivers and our family!

Then please please please Pass it On!  Whether you can donate along with us or spread awareness I would ask that you pass along the links to your family and friends.  You never know who may feel a tug to give...and hey it is a fun way to give and route for our local team!!!

I hope Rivers throws for 5,000 yards this season!  Go CHARGERS!!!  And all glory be to God!!!

"Praise be to the Lord God, the God of Israel,

who alone does marvelous deeds.

"Praise be to his glorious name forever;

may the whole earth be filled with his glory"

Psalm 72:18-19

Amazing Advancements

The advancements made in the medical field always amaze me.  If I were born with Stephen's condition I would not be alive, but over the last 30 years they have developed and improved upon a series of three surgeries that has brought some adults into their late twenties...amazing...but not good enough.  Stephen has only one functioning ventricle and his 1/2 of a heart has to work extra hard.  "In the normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs, and the left ventricle pumps blood to the body.  In a single ventricle heart, there is only one ventricle large enough to do the normal job of pumping blood. This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body while the job of getting blood to the lungs must be done without a pump".  In Stephen's case his single ventricle pumps blood returning from the lungs to the body, and the blood returning from the body travels to the lungs by direct blood vessel connections without ever entering into his heart or a pumping chamber.

The 1st two surgeries began this configuration where all of the oxygenated poor blood from his upper body bypasses his heart and flows passively through the venous system into his lungs. The third surgery will finalize that flow by connecting the lower half of his body ultimately making all oxygenated poor blood flow into his lungs to be oxygenated and will then enter his heart to be pumped out to his body. 
Crazy...right?!  He looks completely normal on the outside...but his entire system is plumbed so differently on the inside.  

I am so grateful that they have made these advancements and have these 3 surgeries.  Without them he wouldn't have survived more than a week.   However these surgeries are only palliative..meaning they only prolong life but do not cure his condition.  They have found that this type of circulation works for about 20 years (if the heart continues to pump strongly and no major complication arise) but the single ventricle tires out and a heart transplant may be necessary.  

Here is where research becomes so exciting.  The advancements being made are incredible.  Here is a short video that describes how some amazing advancements will be put into a clinical trial of 10 patients undergoing the 2nd surgery using stem cels banked from the child's cord blood.  
Stem Cell Use in Congenital Heart Disease
The hope is that these stem cells strengthen the single ventricle to give it greater durability and power to pump blood throughout the body.  This can potentially be amazing as Stephen gets older.  My hope is that this will be able to delay any heart failure or need for transplant for a time...or buy time before they find some amazing "cure".  The key however is funding.  
Funding = Research = Advancements = Life
I am so excited to help support CHD Awareness and research because it will make a difference in the life of my son and of so many other children.  The research brings hope to families like our and patients like Stephen.  Hope that they will one day find a "cure" or better way to make their 1/2 a heart function like a whole one.  
So as part of CHD Awareness Week I would like to show you one place you can donate towards this life saving research.  
You can donate to the Mayo Clinic 's research Center for Regenerative Medicine..the amazing center making this stem cell research possible!  

Here is al little more about the Mayo Clinic

and Here is where you can donate!  Giving to Regenerative Medicine


And while I do hope Stephen will benefit from these advancements and that a better solution to his condition will be available in the future, my ultimate trust and hope comes in the Lord.  For whether Stephen lives 80 years or 10 years...it is my prayer that his death, or any of ours, will not be the end of life but the launching pad into the glory we were made for.  


Thank you for letting me spread awareness...one blog post at a time!!!!

* Quotations were taken from Cincinnati Children's Website

Heart Awareness Month

February is Heart Awareness Month with 

Congenital Heart Defect Awareness Week being February 7th-14th.  

So lets get the awareness going!

Here is some information taken from Children's Hospital of Philadelphia...one of the leading hospitals in the US for pediatric Cardiology and Heart Surgery.  

What are Congenital Heart Defects?

Congenital heart defects occur in the early stages of pregnancy, when the heart is forming. Congenital heart defects include abnormalities in the heart’s structure, electrical system and other abnormalities that affect the function of a baby’s heart.

What are the most complex types of congenital heart defects?

Single ventricle heart defects, (what Stephen has) are among the most complex and challenging forms of congenital heart defects to treat.

Are Heart defects in children more prevalent than cancer?

Yes. In fact, congenital heart defects are approximately 60 times more prevalent than childhood cancer.

"In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD".

Cancer SUCKS!!!!  But so do CHD's.  The fact is if I was born with Stephen's heart condition I would not be alive.  Research and funding are so important and they have made some amazing life-saving progress over the last 30 years.  

So this coming week, and this month I hope to spread some light on CHD's, the INCREDIBLE research taking place, how you can help, and of course on an adorable 22 month old (yes he is almost 2)!

What can you do?  Share this post and help spread awareness!!!!!

Happy Heart Month!!!

Cold & Flu Season

This is the worst time of year for me.  Any heart family or mama with an "at risk" child understands exactly what I mean while the rest of the world gets to be a little more "carefree".  You see I hear the word "flu" and want to board up my house and keep my kids far far from you.  The flu terrifies me.  It can knock down a healthy adult for days and will without a doubt land Stephen in the hospital.  Last year when Stephen had a fever he was sent to the ER to make sure it wasn't the dreaded flu...not the common protocol for most children.  I hated every minute of it.  He had to be held down screaming as they took blood, x-rays, urine, ect.  It broke my heart watching him go through it and I want to do everything within my power to keep him from having to go through it again.  And that was just when they thought he might have the flu...having it would be a whole other story.  While the flu can be serious even in people who are otherwise healthy, it can be especially dangerous for Stephen as he falls into the category that is at "high risk for serious flu complications".

So in an effort to protect our little guy and others like him I thought I would help educate readers   =0)
Here is a little information from the Center of Disease Control and Prevention...

How does the flu spread?

"People with flu can spread it to others up to about 6 feet away. Most experts think that flu viruses are spread mainly by droplets made when people with flu cough, sneeze or talk. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs. Less often, a person might also get flu by touching a surface or object that has flu virus on it and then touching their own mouth or nose."
(I found it interesting that it can spread by just talking.  So many people think they are fine if they just don't cough on people and stand back...not true!)

How long can a sick person spread the virus to others?

"Most healthy adults may be able to infect other people beginning 1 day before symptoms develop and up to 5 to 7 days after becoming sick. Children may pass the virus for longer than 7 days.  Symptoms start 1 to 4 days after the virus enters the body. That means that you may be able to pass on the flu to someone else before you know you are sick, as well as while you are sick. Some people can be infected with the flu virus but have no symptoms. During this time, those persons may still spread the virus to others."

(Extra sucky...people are contagious for 7 days!  I mean it is hard to get people to stay home when they have a fever let alone once they "feel better")

By no means do I actually expect people to stay home for a week when they are sick (though it would help)...but I wanted to take the time to inform people of just how contagious the flu is and that there are people out there who are at a much higher risk of severe complications.  The standing doctor orders are for our entire family to not to be around anyone who is sick with the flu or even anyone who has been around someone who is sick with the flu as they can be carrying the virus and can be contagious before symptoms arise. While I would prefer to be a little more carefree I am happy to be a germaphobe if it keeps my little guy healthy.   

So please pray that we can avoid flu as they have already said it is going to be a rough season.  I know God is in control and I am grateful that I have my precious man to be protective of =0)  
And say a pray for Pastor Charlie.  We worked with him and his wife Elaine during our short year in Carlsbad.  He is in the ICU on a ventilator from H1N1...something I am sure they never expected.  The flu this year is no joke.  So please pray that Charlie makes a full recovery and pray for peace and strength for Elaine during such a scary time.

And this cold & flu season see what you can do to spread the love...not the germs!

Much Love,

Kim

Fallbrook Froyo Fundraiser!

To all of our local friends...

We will be having a fundraiser at Froyo in Fallbrook on Saturday, September 21st ALL DAY!
20% of your purchase will be donated to the Heart Institute at Rady Children's Hospital!
Just print the flyer below or verbally mention this Team Heart Hero fundraiser and enjoy some yummy yogurt!  They will be open from 11am to 9pm so please mark your calendars and join us in raising support for a great cause!

To our friends who do not live locally...

You can still support our fundraising efforts by clicking on the link below and making a donation.

Russell Family Fundraising Page

Thank you for your support!!!!
~The Russells

CHD Awareness Week

Well today is day 6 of Congenital Heart Awareness Week and I am finally getting around to blogging about it.  The truth is I wasn't sure what to write.  I am still very much so in the learning phase of all of this and don't fully know what I can do help...but I do want to make a difference.  
The fact is Congenital Heart Defects (CHD's) are the most common type of birth defect and are the leading cause of all infant deaths in the United States.   Nearly one of every 100 babies is born with a CHD.  Crazy right?  Single ventricle defects, such as Stephen's, are among the most complex and challenging forms of congenital heart defects to treat.  His specific defect is rare, occurring in just five out of every 100,000 live births.  
Research is critical.  It is amazing to read how far treatment and care has come for children like Stephen.  30 years ago most babies died and now with multiple heart surgeries these Heart Heroes are reaching adulthood.  Amazing.  I want to help.  I want to give.  I want to spread awareness and pray that others join in too.  In October our family was able to raise over $2,000, and our team around $13,000, to support the Heart Institute at Rady Children's Hospital.  I want to keep that up because it matters.  Research matters.  It changes lives and offers hope.  The advancements that are being made are incredible and I pray that 30 years from now they will be doing even more amazing things for these little warriors and their families.  
So it is my goal to better educate myself on these matters and to find ways to join in and help.  I would love to do a fundraiser one day, even a simple one to start, and help raise money for the hospital and the Children's Heart Foundation.  In the meantime we will continue to cook meals and make blankets for the Ronald McDonald House with our youth group and find little ways to say thank you to the doctors, nurses, and staff that have touched our lives.  
I again want to thank you all for being apart of this journey.  For taking time to read this post and learn a little more about CHD's.  And mostly for your prayers for Stephen.   Can you believe that in 2 short months he will be a year old!  What a blessing!  I have some fun ideas planned and maybe even some ways people can get involved...stay tunned =0)

Stephen doing a little research of his own =0)