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.

LANDON'S TRANSPLANT - 5th anniversary!

Tomorrow, June 17th, is the 5th anniversary of Landon’s small intestine transplant. Unbelievable! At times it seems like it was all just a dream. But then I read back over the old blog describing what happened and it all comes flooding back in, the apprehension, the anticipation, the questions, the anger, the fear, and the love.

For those readers that don’t know Landon’s story let me tell a little about it. Landon Joines was born on April 20, 2009. Within hours of Landon’s birth, we were told that Landon was going to die. Landon’s intestine had twisted around the artery normally supplying blood to his small intestine. His small intestine had died and doctors stated that Landon would not survive. In what we describe as divine intervention, we discovered that Landon could survive, with a transplant. Landon’s small intestine was removed and intravenous feeding nourished Landon for more than two years. Until this happened:

Here is what was posted on Landon’s COTA blog on this date, June 16th, 2011:

“TRANSPLANT!!!

Submitted by Eldon on Thu, 06/16/2011 - 2:21pm

We just got a call from Duke. They have a perfect match. It may be time for the transplant. We have given the OK and are packing to leave for Duke now. We will update from Duke tonight…... Please begin praying for Landon, Now!”

This was posted the next morning on the 17th:

“Landon’s Transplant is happening now.

Submitted by Eldon on Fri, 06/17/2011 - 7:19am

Sorry for the silence. I had to get some sleep. The actual transplant surgery started about 5am. They had to wait for the organ to arrive. Landon is receiving a small intestine. We are expecting an update at any time. The organ must have been very close it only took them about 90 minutes to get it here. Our hearts are breaking for the family that just lost a child. We are so thankful for their decision to donate their child's organs. We will update as much as possible, today. I might try to get the streaming video back up from the surgical waiting room. I finally got the sound working. Jeremiah, Shelly, and Kathy were up all night. They are very tired.”

As the transplant was taking place, Shelly (Landon’s mother), posted this on the blog:

“Waiting

Submitted by Shelly on Fri, 06/17/2011 - 12:35pm

It seems that all we get done is waiting. In the begining we waited while I was pregnant to see our beautifu baby boy. Then we waited to see if his life could be saved. We have waited 11 months for this transplant and now as I sit here waiting for my baby boy to come out of surgery it is hard to hold back tears. Tears of joy and sadness. Last night as I stood beside my small, sweet boy as he was being put under in the operating room I cried. He has come so far in life, more than was ever expected. Yet I was sad. His little body has gone through so much. So many surgeries with more to come. My heart was breaking for him, the struggles he has been through, the scars that will be with him for the rest of his life, the new challenges ahead. I wondered if he would be any different. His whole life just changed. I also had tears of joy for Landon. I was so happy that he was receiving a transplant, that he would not have to drag his bag of fluids and pumps around anymore. I was happy to know that he was going to have a chance at a normal life. I thought about the fact the Landon will probly never remember any of this. Our memories and photos will be all he has of this crazy roller coaster we have been on for 2 years and 2 months. My son is so strong and ready to live. He has taught us to love and be happy with ourselves. I just want to thank the donor family. I do not know who you are or how this all came to be but thank you for taking your tragedy and turning it into our joy. I am so thankful you chose to be a donor. I ask everyone reading this to think about being a donor. Talk about it with your family and loved ones. Think of all the lives that can be saved or improved with you. I have always been a donor and never thought that I would have a child like Landon. As a teen I felt that I had to be a donor, if I could help someone after I was gone would help my family know I was still living on through others. I felt it was morally the thing to do. So to all donors THANK YOU for thinking of others without you more lives would be lost. We are still waiting for Landon to come out of surgery. I can't wait to kiss his little face and tell him how proud I am of him and how proud I am to be his mother. He is changing lives and he doesn't even know it. Thanks to all for your prayers and support. We will write again soon. Don't forget to check out the live feed on facebook to be with us when the doctors come to talk to us after surgery.”

And then later that day:

“The Transplant is done!

Submitted by Eldon on Fri, 06/17/2011 - 2:06pm

The transplant is done. Everything looks good. We met with the transplant surgeon and she is very happy with the way things went. I hope everyone got to see a little bit of the streaming video. We had some problems with my computer. I broke the cord to the power supply when they called us to meet with the doctor. At least we had another computer but it is slower and I know it was freezing up. Landon will be in the ICU for several days. We are getting ready to go up and see him, now. We will post more updates soon. We hope to get some good pictures of him in the ICU. We will post them here.”

Here are some pictures that were taken after the transplant:





And here is Landon today, five years after the transplant. Soaring on his swing that he loves to swing on when he comes to maw maw's house:

 

 

Landon has had very few problems since the transplant. He is growing, slowly. Gaining weight will probably always be a problem for him. He is full of energy and very smart.

 

This is a big milestone for Landon. When we were first considering a transplant for Landon we were told that at that time the expected mortality for intestinal transplant patients was about five years. We were told not to expect Landon to live more than five years even after the transplant.

 

God has been so good to Landon and our Family! We are so blessed.

 

(This is the original location of Landon's Blog, before COTA.  We have not posted much in a couple years because we were just so happy to watch Landon growing up like a normal little boy. We will once again begin posting updates about Landon on this blog and transferring blog post from the COTA blog to this blog. Once all the blog post from the COTA blog have been transferred Landon's entire story will be available on this blog.)