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Our Heart Hero

Lindsey Howard

Posted on January 24 2019

 Two years old.

Ten surgeries.

Wispy curls.

Tiny hands that sign, "I love you."

Little feet that dance.

Lips that speak first words, "Da-da"

A smile that lights up the world.

A heart that with every beat...fights.

February is American Heart Month, and to celebrate we would like to honor the most courageous heart we know!   Yellow Rose is selling a very special tee for a very special boy.  All of the profits from our "Talon Tees" will go to the family of Talon Perkins, as they fight for the life of their sweet boy.  

Every shirt sold will provide love, support and encouragement to a family  facing heart-wrenching decisions and unimaginable stress.  If we can lift any part of the financial burden that comes along with Talon's diagnosis, and allow them even more time and energy to focus on what matters most, time with their precious boy -- what a gift that will be.

I have asked Beth, his amazing momma, to share their story below.  Please take some time to read her words, and to prayerfully consider this opportunity to give!

 We prayed for a baby for a long time. We prayed that we would be patient as we waited on God’s perfect timing. We were thrilled when we found out we were pregnant. We had some fertility help and lots (lots) of appointments with a high risk fetal maternal doctor, due to an in utero diagnosis of intrauterine growth restriction. I was placed on bedrest at Norton’s Hospital for 2 weeks and Talon was born via emergency c-section on July 29th, 2016.  Talon was 6.5 weeks premature and weighed only 2 lbs 14 oz. The doctors immediately discovered something wasn’t right and after some tests they diagnosed him with 3 holes in his heart (Aterial septal defect, Ventricular septal defect, and Patent Ductus Arteriosus) and told us he would need an open heart surgery to close them. We were terrified and pleaded with God that he would heal our sweet baby.

We decided to transfer to Cincinnati Children’s Hospital for Talon’s open heart surgery and it was there they discovered an even worse diagnosis, Pulmonary Vein Stenosis and Pulmonary Hypertension. Both are very rare and very very serious. We were devastated and once again pleaded with God that He heal our sweet boy.  

Talon’s 2.5 years of life have been filled with constant doctor appointments and surgeries. He has been so unbelievably brave and has undergone more than anyone should. He has had two open heart surgeries, seven cardiac catheterizations, and a G-tube surgery. Some surgeries have been at Cincinnati Children’s Hospital and some have been at Boston Children’s Hospital. He has had cardiology appointments every 2-4 weeks for the past 2.5 years. He is also followed by numerous other disciplines; Pulmonary, Neurology, Urology, Genetics, and ENT. Talon has many delays and see’s physical, occupational and speech therapies every week. He is slowly
making progress in these areas though and we give God all the praise for every milestone that Talon reaches! Just last week, he said “Da Da” for the 1st time and it was the most amazing moment for Kyle and I to hear him say his 1st word!

Talon’s teams of doctors feel strongly that Talon’s diagnoses will cause heart and lung failure.  They feel that a 3rd open heart surgery would offer “some” extended time to Talon before he will need a lung transplant. Unfortunately, a lung transplant is not a fix. Its trading one diagnosis for another.  Lung transplants are the most rare and difficult vital organ transplants. At this point we are just praying for guidance. We are utterly overwhelmed with the gravity of the decisions we have to make for Talon. We are praying for complete healing of Talon. We trust God and believe in His mercy and protection.

 

Thank you all for your kindness and prayers for our family. We have been amazed at the support and love by our family, friends, community and people we don’t even know!  We would like to give a heartfelt thank you to everyone who is buying a Yellow Rose & Co shirt in honor of Talon!
Having a medically complex baby is expensive. No way around it. Kyle has had to take extensive time off work to be at doctor appointments and for hospitalizations. I am a physical therapist, but I’ve not been able to go back to work for 2.5 years now. I am the full time caregiver for Talon and due to his complexities, we just simply do not want his care to be out of
our hands. We spend a lot of money in gas traveling back and forth to Cincinnati Children’s Hospital. We actually just moved from Campbellsville, KY to Lexington, KY in order to be closer to Cincinnati.

We have expenses from co-payments for his nine different medications, one of those being chemotherapy (which he is on to hopefully help slow down the rate of the pulmonary vein stenosis). We also have co-payments for the three different therapies he receives every week, physical, occupation and speech therapy. We have the expense of traveling. We have lived at the Ronald McDonald House for months at a time. We have stayed at a hotel in Boston for weeks at a time in order for Talon to receive care at Boston Children’s Hospital. We have expenses for co-payments for the numerous disciplines that follow Talon; Cardiology, Pulmonary, ENT, Genetics, and Urology. Talon has had frequent doctor appointments with his pediatrician for weight checks (common for heart babies due to retaining fluid and not gaining weight well), well visits, and 2 years of shots of Synergist.

Congenital Heart Disease (CHD), has turned our world upside down. There is no fear, like the fear of losing your child.

As I said previously, thank you all so much for your prayers and financial help! You all are truly playing a part in helping us keep fight this terrible disease.


Love, Kyle, Beth and Talon

For more updates as they occur, please follow along with "Talon's Heart Journey on Facebook."

 To purchase a Talon Tee, please visit our store or click link below: 

www.yellowroseandco.com/collections/talon

 

 

 

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2 comments

  • Pawpaw & Pat: February 12, 2019

    Thank you Beth & Kyle, we thank God for giving you such tremendous love, lknowledge, and strength. Talon has gained those same attributes for he is tough as nails!
    All of you are in our continuous prayers. We love you.

  • Jacks Nana : January 26, 2019

    You will always be in our hearts and prayers. If I didn’t see the valiant struggle, the amazing gifts 0f love and compassion with our little warrior and his amazing Mom and Dad every day, I could not begin to know a little about your journey. Jack has been such a gift to us. And though I loathe his suffering, he has remarkable spirit and joy that lifts everyone who meets him. We learn from him everyday. Thank you for sharing your amazing Talon story too!

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