Well as you can see our heart warrior is doing just fine.  I know, I know, I haven't updated in forever.........my bad!  Short catch you up synopsis below:

 

Jacob Ryan graduated Kindergarten May 18th, 2013 and started 1st Grade on August 19, 2014.  He has just been your typical boy this summer.  Jumping on the trampoline, mastering the front flip, digging in the dirt, playing in the rain and then the mud....lol. 

He has been thriving and living like a kid should, happy and healthy!  His yearly cardiology report was spot on A+!  Thank the Lord for that!  His yearly well visit with his pediatrician was good as well.  He grew three inches but only gained two pounds........tall and skinny!  He spent time with both grandparents this summer and had a great birthday party complete with fireworks and a campout with pancakes cooked Daddy style the next morning.  He and his friends had a ball!

 

 

 On the indoor side of things he is obsessed with Legos!  He will spend hours upon hours following the instruction booklets and have those things put together in no time flat!  He lost one tooth this year and another one is very loose.  My little boy is growing up so fast it just doesn't seem possible.

 

 

For all of you who have prayed and or continue to pray for Jacob we say a huge heart felt THANK YOU AND GOD BLESS!

Long overdue update!

Well I guess I need to apologize for not updating this blog sooner but we have been quite busy with the Heart Walk and raising funds for Saturdays walk. Jacob has also been keeping us busy! He is always on the go and never tires out which is good for him and draining for us.......LOL. In any case our super hero is doing fantastic!


Jacob has been very busy as well. He and Jacob Baker are the Co-Chairs for this years AHA Start Heart Walk. They have been on billboards all over the Charleston area, TV commercials, news stories, and radio spots. These boys are both walking miracles and we need to thank organizations like the AHA for their survival. If not for donations to the AHA which funds research our boys may not be here today.

See what our little guys have been up to!

Our boys at University of Charleston shooting their commercial and photo shoot

The official Co-Chairs of the 2011 Greater Charleston START! Heart Walk

Our cool logo designed by Jacob Bakers mom Kathy!

Below is the link to the litte TV interview they did for our boys

http://www.wchstv.com/newsroom/eyewitness/110912_6599.shtml

I also need to post the video of Jacob's ball delivery at the Great American Ball Park in Cincinnati.  Most of you have probably seen it on Facebook, but I will post it on here as well, eventually.  Also waiting on a DVD of the commercial we cut for the AHA this year as well.  We will get all that posted as soon as we receive it! 

Thank you so much for all of your support! 

Pulse Ox West Virginia (Corbin's Law)

I recently had the pleasure to meet and become friends with Ruth Caruthers, a fellow heart mom.  Eventhough her story and mind differ dramatically we share a common goal; to get pulse ox testing mandated in the state of West Virginia.  Kathy Baker, myself and Ruth are working on getting a bill put before Legistlature to make this a law and we are meeting with the AHA today to get started.

Ruth lost her son Corbin early this year to multiple heart defects caused by Williams Syndrome.  Had her son had been monitored by pulse ox when he was in the hospital after birth the defects most likely would have been caught and his life may have been saved.  Ruth is a very strong woman and I respect her tremedously for what she is doing.

Check out the link below to see Ruth and myself interviewing with WVVA News and please support Pulse Ox screen by signing the petition at the end of this post.

Moms Trying to save lives of CHD infants

Wont you sign it to save the life of a new born?
PULSE OX PETITION

Why I'm Walking for Team Jacob

At 28 weeks into my pregnancy we found out that our baby had "something wrong" with the heart. We had just learned hours earlier that we were having a boy whom we would name Jacob. Excitement turned to fear and uncertainty when I received the phone call later that day. Darkness loomed with thoughts that our baby may not survive the pregnancy let alone surviving after birth. Boy we were wrong!


On July 6th, 2008 Jacob was born at 7lbs 2oz and 19 inches long, and "healthy". We had learned in previous months that Jacob had Tricuspid Atresia. This is condition in which the right side of the heart failed to form.

On July 30th, 2008 he has his first heart surgery (pulmonary artery band) that would allow him to stay awake eat, and grow as needed until he was able to have his second surgery.

His second surgery (bi-directional Glenn/atrial septectomy) was completed on March 13, 2009 and we went home four days later on St. Patrick's Day.

His third surgery (Fontan) was performed on March 8th, 2011 and we again went home on March 17th, St. Patrick's Day.

I walk for my son and to raise awareness for Congenital Heart Defects. I walk because if not for research and funding these procedures may not exist. I walk because my son is a "SURVIVOR" and I want to support him anyway I can. I walk because my son is alive and thriving. I walk because I love my son. I walk because I want every parent and child affected by a CHD to know that there is hope and that they have all the support they may need. I walk because I believe in miracles.

http://jacobryansheart.blogspot.com/

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Easter/Spring Pictures

Below are some pictures we took for Easter/Spring down in my hometown of Rocky Gap, VA at my moms place.  :)  We love it down there and there's no place like home!



Help us fight the #1 birth defect!

Team Jacob is once again participating in the American Heart Association Start! Heart Walk.

Jacob R. and Jacob B.

These two boys were both born with a severe congenital heart defect. Jacob R. (Left) is missing the right side of his heart. Jacob B. (Right) is missing his left side of his heart. Together they are making a difference!

THE FACTS:

• Congenital Heart Defects are the #1 birth defect. Source: March of Dimes

• Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes

• About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation

• Nearly twice as many children die from Congenital Heart Defects in the United States each year as all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation

• This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

• The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

• Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

• Though research is ongoing, at least 35 defects have now been identified.

• 4-8% born with CHD have Hypoplastic Left Heart Syndrome
• 4-10% born with CHD have Atrioventricular Septal Defects
• 8-11% born with CHD have Coarctation of the Aorta
• 9-14% born with CHD have Tetralogy of Fallot
• 10-11% born with CHD have Transposition of the Great Arteries
• 14-16% born with CHD have Ventricular Septal Defects

• Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes

• It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes



WHAT CAN YOU DO?


JOIN TEAM JACOB

Please help us make a difference. If you are local and you would like to walk with team Jacob you can do so by clicking here. When asked, select that you want to join a team and type in Team Jacob.

Event Info:
Where: WV State Capitol Grounds, Charleston
When: September 17th, 2011, 8am



DONATE

Our Goal this year is to raise $3000. Last year we raised $2,000 and we are starting much earlier this year. Please help us reach that goal.

CLICK HERE TO DONATE

Funding= Research. Research saves lives.

Please help us create a brighter future for both Jacobs and thousands of other children fighting heart disease.

Thank you!

So we have the all clear for visitors as long as they are NOT sick. Jacobs O2 level was 95, which is great considering it was 78-80 before the Fontan. His INR test came back normal, this test is to check to see how the coumadin is working.

On our way out of the office Jacob started doing his super hero pose in front of all the doctors and nurses! They were laughing so hard, they loved it!

Jacob still has to get blood-work every two weeks until the coumadin gets leveled out. After that it will be once a month. No rough housing for another two weeks, but normal boy play doest exclude rough housing. He just can't have anyone sitting on his chest.....duh or take any direct hard blows to the chest. Other than that he is good to go! Guess I need to start posting post-op at home updates now.

Thanks again to everyone for praying for our little super hero!