Jimmy Kimmel's Baby

I just watched the video of Jimmy Kimmel telling the story of his son’s birth and how they discovered their newborn baby had a, life threatening, heart defect. This story brought back so many memories of what we experienced when Landon was born. The joy of having a new baby in the family and then, within a few hours, realizing something was wrong. The anguish of watching and waiting as doctors tried to figure out what was wrong. And then, being brought to our knees by the doctors telling us our new born baby was going to die.

In the video, Jimmy Kimmel say’s “even atheist began praying for their baby”. I’m sure that happened for Landon. At first our family, a pastor, and the doctors prayed for Landon. Soon there were dozens praying for our baby. Within days, there were hundreds and then thousands praying. We watched and prayed as the miracle began to unfold and the, two year, journey toward a transplant for Landon began.

Jimmy Kimmel spoke about something else that we feel strongly about. He said, “If your baby is going to die, and it doesn’t have to, it shouldn’t matter how much money you make”. In other words, healthcare should be equally available for all, no matter what your income, social status, or wealth is. No one should ever be denied medical care, because of a pre-existing condition. Also, everyone should have access to the best medical care available. Doctors, patients, and the families, should determine the course of treatment, not bureaucrats in an insurance or government office.

In May of 2009, Medicaid denied Landon the treatment his doctors, the doctors in Boston, and our family had determined Landon needed. Landon needed to be treated at the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital, in Boston, Massachusetts. There was no treatment facility like this available anywhere else. This was the best treatment available for Landon. Medicaid denied Landon the treatment, we believed could save his life. We were told he was denied access to medical care in Boston because North Carolina Medicaid did not have a financial agreement with the State of Massachusetts as to reimbursement or payment for medical services. The best medical treatment available for Landon was in Massachusetts. Yet, Medicaid denied him that treatment because he lived in North Carolina. In America, that’s just not right. This denial began an epic battle with North Carolina Medicaid to get Landon the medical care he needed, medical care that everyone involved agreed could save his life. I will write more about our battle with Medicaid in a future blog post.

Here is a link to the emotional Jimmy Kimmel video on Facebook:

https://www.facebook.com/jimmykimmel/videos/1904032659873827/

The Ronald McDonald House of Winston-Salem

In 2009, four days after Landon’s birth and surgeries, we were exhausted. We refused to venture far from the hospital for fear something would happen to Landon. We took turns sitting by Landon’s bedside and sleeping in the Pediatric Intensive Care waiting room, where we had staked out our corner as a campsite. We “freshened up”, and brushed our teeth in the nearby bathrooms. Our meals came from the hospital cafeteria.

A social worker from the hospital approached us and told us the Ronald McDonald House had granted us a room. The house was a couple blocks from the hospital. We could now take turns going to the house to sleep, shower, and eat a meal. The Ronald McDonald house became a port in the storm for the next couple weeks.

(Shelly in the kitchen at the Ronald McDonald House)

The house was clean, secure, and had a private bath for each room. There was plenty of food stocked in the kitchen. Every few days volunteers would come to bring prepared foods or to cook a meal for those staying at the house.

many organizations have blessed and helped us during this journey with Landon. The Ronald McDonald House in Winston-Salem, North Carolina was one of the first. Families experiencing one of the most difficult times imaginable can find help at the Ronald McDonald House. If you find it in your heart to somehow help and support the Ronald McDonald House, please do so. Here is a link to their web site: https://www.rmhws.org/house/about-the-house/

Do you believe in Divine Intervention?

Do you believe in Divine intervention? Do you believe that God will step in and orchestrate a series of events, in response to a prayer or request? Did God plan this series of events from the start? Or, do you believe our lives are just like a feather in the wind, blown around by a series of coincidence. Or, like Forrest Gump said, is it, “a little of both”.

When Landon was born, I witnessed something that changed the way I think about our lives and the existence of God. Even today, eight years later, I can only describe what happened as Divine intervention.

It was like watching a car wreck in slow motion. A car, with little baby Landon inside, was speeding towards a brick wall. The outcome would be certain death. Suddenly, the hand of God reached down, with split second timing, and turned the car in a different direction, sparing Landon’s life.

I’m not going to go into detail here about what happened. I will say that I have been working on a book about Landon, his transplant, and the journey all of us took that got him to a transplant. I hope to have it ready to publish by the end of this year. Please sign up to "follow" Landon's blog. It will help us to have as many followers as we can get, when it comes time to publish the book.

I do want to continue reposting the blog entries from the time of Landon’s birth. I made this post after we found out Landon was a candidate for a transplant:

Thursday, April 23, 2009

The operation went well. There was some inflammation but no sign of infection. They have removed the small intestine and attached the large intestine to the duodenum. They have established a catheter in his right thigh and he has a temporary tube in his stomach. The surgeon said that the catheter in his leg will probably be used to feed him for several years. Now we will be watching for any signs of infection or other complications. The surgeon now seems to be very optimistic.

We discussed what to expect in the short term and long term. In the short term we need to get through the next four days with no complications. After that we will probably be here for about four weeks. We will be learning about how to care for Landon, when he gets home. In the longer term, it is common for the liver to be damaged by the formula used for intravenous feeding. The doctors in Boston have modified the formula and it is not causing as much damage. They have discussed with the doctors here how to prepare the formula.

After Landon gets home there will be constant doctor visits and constant care. It may be several years before the need for a transplant.

Posted by Eldon at 4/23/2009 07:20:00 PM

Pictures from Landon's 8th Birthday

Today is Landon's Birthday - Repost of First Blog Entry

Today is Landon’s 8^th Birthday. On this day, in 2009, the day began full of joy and laughter with Landon’s arrival. Within hours we began an emotional journey. A journey that changed our lives. A journey that continues today. Many of our friends and family have been with us on this journey. Yet, many others don’t know what happened to Landon and why his life is so amazing. This morning I am going to repost the first blog entry made just after Landon’s birth, in 2009. This is not an attempt to draw you back into that emotional time. It is an effort to show what God has done in Landon’s life and what a miracle Landon’s life is. This evening I will post pictures from Landon’s birthday party. Here goes:

Thursday, April 23, 2009

I thought I should update everyone on the situation with our new grandson, Landon Allen Joines. Jeremiah's son.

Landon was born early Monday morning, April 20th, 2009. At first everything looked fine. Within a couple hours his abdomen began to swell. A decision was made to send him to Brenner's Children hospital in Winston. The initial diagnosis, in Winston, was that he was bleeding from his liver possibly due to an injury at birth. Several test were done and no blood was found in the abdomen. Tuesday morning they began to suspect the colon. An upper GI was performed and a blockage was detected. They took him to surgery and discovered that his small intestine had twisted and the blood supply was cut off to the intestine. We were told that they would leave the intestine intact and look at it again Wednesday to determine if any blood supply was returning. We were also told that he probably would not survive. On Wednesday they took another look and it was not good. We were told that we should let him go. In the meantime were contacted by a family that has gone through the same situation. Their son received a colon (small intestine) transplant at Georgetown University and is now six years old. We have been in contact with doctors in Boston that have urged us to pursue a transplant. We are also making contact with the doctors at Georgetown. We have instructed the surgeons here to do the surgery today that will prepare him to survive until a transplant can be done. We are expecting the surgery to begin at any moment. After that we will be watching for any infections or complications. The next week will be critical. We have been told that he has a 50/50 chance of surviving this surgery

Vulcan Salute

Landon says he is definitely one of us.

He's been working on his Vulcan salute.

Eldon & Landon's Stikbot Video

Landon and I have way too much time on our hands. We found this neat toy at Walmart last night. It allows us to make stop action video with a phone camera. Check out our video. This is how we spent our Sunday afternoon. Watch until the end to see the video we made.

Teaching Landon to Write

I have begun teaching Landon how to write. He is a fast learner. This is what he wrote during our first session:

I am a boy. I’m seven years old and I am a little tall for my age. I am not skinny but I am slender. I have blue eyes and my hair is light brown with some red.

I like to dance, color, and play video games. My favorite food is pizza. I go outside to this big oak tree in the middle of the yard. I make outside stuff, give them to people and they pretend to eat it. They give me pretend money.

I go to school at the Blue Ridge Christian School. I am in the second grade. At recess, I like to play the computer. I like to type out “dance four” and dance.

My bad thing is I had a broken arm. My arm is getting better. I will wear a splint for one more week.

Sometimes I go to the hospital and they take blood from my arm. I went to Duke hospital and they said I need to drink more water for my kidneys.

I am learning to write. My favorite stuffed animal is Dotty. Her Birth Day is June 16^th. She is a rainbow cat. She is pretty. I like to play on my phone.

Landon

I will continue to work with Landon on his writing. He seemed to enjoy it. My goal is to get him to where he can write and post to the blog, by himself. Landon was fine until we started talking about the hospital. He is reluctant to talk about it. Posting to the blog could help him.

Please click the “follow” button to follow Landon’s blog. We need as many followers as we can get. Also, "like" and share to Facebook.

Eldon – Landon’s grandfather

Reviving Landon's Blog

We have decided to, once again, begin posting to Landon’s Update Blog. (This is the original blog. The blog we started when Landon was first born. The COTA blog was discontinued after Landon’s transplant was completed. We will transfer the post from the COTA blog to this blog soon.)

First, let me explain why we stopped posting updates and why we haven’t been posting to it for several years. After Landon’s small intestine transplant, we were watching for any signs of rejection or for anything else that could go wrong. Landon continued to heal and to grow. There was no rejection and very few complications. We were content to just watch Landon grow. He was, and still is, so full of joy and boundless energy.

We wanted Landon to live as normal of a life as possible. A life free from hospitals, doctors, machines, and feeding tubes. That’s what we prayed for and that has become a reality. If you meet Landon today and you didn’t see all the scars on his body you would think that he is just a normal young boy, and he is.

We wanted to protect Landon. Every aspect of his life had been public for several years. After the transplant, we felt like we just needed to huddle around Landon and protect him.

We became selfish with Landon’s life. Many people had followed his story, prayed for him, donated money for his transplant, and helped to raise money for his transplant. Those people, you, invested emotionally in Landon's life. It hasn’t been fair for us not to share the results of those prayers and all the hard work it took to get the transplant for Landon. It saved his life. It couldn’t have happened without you.

We have decided to begin sharing as much as we can about his life and to begin posting regular updates to the blog. Landon might even begin making some post here himself soon. He will not talk about the transplant. He doesn’t like to hear us talk about it and doesn’t like to see pictures of himself in the hospital or with the tubes in his body. If I can get him to do it, writing to the blog might become therapy for him.

I have discovered that there is such a thing as Post Traumatic Stress Syndrome after a medical crisis, such as what we experienced with Landon. We have begun working on a book about Landon’s life and his transplant. (I’ll write more about the book in upcoming post.) I have discovered that it’s very hard to write about some of the things that happened without crying, even though I know the outcome is good. Some days I just can’t do it.

Landon's grandfather - Eldon

P.S. - Landon recently had a broken arm and he wanted to show you his cast. His arm is healing nicely and the cast has since been removed.