A Photo Display of a Fun Time

It was two hours before it was time to head to the hospital. As we gathered our things that we'd need for the day, I recalled times in the past that a trip on the highway to the hospital was filled with fear and anxiety.

But not today. Not this time. Today was a celebration. It was the annual Holiday Party at the children's hospital where my daughter received her liver transplant. It is a day filled with fun, food, dancing, socializing with the medical team and meeting Santa. It is something my family looks forward to every year. This time it meant a little more to me. As we prepared to leave, I put together a gift bag.Waiting inside the bag, was something I've been working on for years. It was a signed copy of Angel Donor for my daughter's Transplant Team.  

Once at the party, the fun and games began.Instead of medical exams, the children arrived to create their own Santa Hats.  Using foam letters, the kids attached their names to their own Santa hats.

A favorite for my 2 younger ones was the face painting!

There was lots to celebrate. Many children are enjoying a second chance at life. Some are enjoying an oasis away from the chaos of disease. All are enjoying fun family time! 

  

All the kids there looked like they didn't have a care in the world. The kids made new friends, the parents made new friends and a good time was had by all. There was even time for family photos with Santa.

If you are a family who has been struck with a serious childhood disease, what are some ways you and your medical teams have celebrated? With the endless stress during the year, I'd love to hear your happy stories! 

Common Myths About Organ Donation

While there are some extraordinary and uncommon experiences out there, the truth is organ donation is a life saving option when the unthinkable happens. According to facts from the Donate Life Pa website, while about 85% of Pennsylvanians support organ donation, only about 45% are registered. Why? After viewing different conversations on social networking sites, I think alot has to do with myths about organ donation.

#1 -  One of the biggest myths and ethical concerns I see is that people are afraid their lives won't be saved by their own doctors if they are registered organ donors or if they agree to donate their organs. 

Fact : The  medical staff whose job it is to save your life is compeltely separate from the transplant teams. It is not until after death is declared that organ donation is considered and a transplant team is notified of an available organ.

#2 - It is unethical to donate an organ.
Fact: Organ Donation is an acceptable process for most religions. Here is a list of major religions and their position on organ donation found at Donate Life PA's website.

#3 - My organ is going to someone who did not take care of themselves.

Fact: - Most transplant candidates are on the transplant list due to severe diseases through no fault of the patient. In the low instances of drug abuse or alcoholism, the patient must be sober for at least five months before even being added to the transplant list.

There are several other myths about organ donation. Please take a look at Gife of Life Donor Program.

All About Biliary Atresia

In my newest children's book made especially for other children living with liver disease and transplantation, the main character, Olivia, has a liver disease called Biliary Atresia, which caused her to need a liver transplant. In today's post I will discuss just what this disease is, how it is treated and what to look for. 

What is Biliary Atresia?

Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line. 

What are the symptoms of Biliary Atresia?

• Yellowing of the baby's skin
• Yellow eye whites
• Dark Urine
• Pale, white or clay colored stools.

If a child is diagnosed with the disease, there are many places to get support. 

• My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease. 
• Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org  and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
• If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.  

If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can. 

Tubie Friends for kids on Feeding Tubes

A hard fact of life for a child in need of an organ transplant is that many of them will need a feeding tube at some point during their illness. The illness often causes the children to lose their appetites and they are no longer able to eat or drink enough on their own. Optimum nutrition is important for the children so they can properly cope with their disease and stay hydrated. It's also necessary to keep their nutrition in the best shape prior to transplantation. Receiving an organ is a serious surgery and the children's body needs as much nutrition as possible to be able to handle the surgery and to be able to heal well afterwards.

So what happens when your child can no longer eat or drink enough on their own? This is when most doctors will order a feeding tube. Your doctor will decide which one is best for your child. It is important to work closely with your child's doctor as each child is different and responds to their illnesses differently. 

Once it is decided your child will need a feeding tube, depending on their age, they might find this to be a trying and scary time. As infants they may not understand what is happening to them. As children get older they may feel self conscious. Whatever your child may be going through at the moment, I came across a great website that may take some of the anxiety and stress out of this situation. 

I stumbled across Tubie Friends. This is a great website where they will get a Tubie Friends Surgeon to gather information and help create a stuffed animal with a feeding tube made especially for your child. It is definitely something to look into if you have a child who needs a feeding tube. I always like to find a way to ease the stresses our kids have to deal with. Check them out at http://www.tubiefriends.com/ 

The Transplant Games of America

It's that time of year again. The 2012 Summer Olympics has the world on the edge of their seats. We've already seen several Golds won by the US. It is a wonderful compilation of all the athletes' hard work, paying off in the great city of London. Congrats to all the Olympic Athletes for jobs well done!

Meanwhile, in the Grand Rapids in Michigan another set of games is going on. The Transplant Games of America. Taken from the official Transplant Games of 
America website, the games are a " a multi-sport festival event for athletes who have undergone life-­saving transplant surgeries and living donors. Competition is open to anyone who has received a solid organ transplant or bone marrow donation. 


Visit their website website to learn more about them and the heroic athletes and families that are there this summer: http://www.transplantgamesofamerica.org 

Stay tuned in days to come as I try to get some of the athletes to stop by the blog for an interview.

If you participated in the Transplant Games, contact me on my Facebook Page http://www.facebook.com/AngelDonorBook ! 

                          HAPPY TRANSPLANT GAMES! 

Press Release for Angel Donor

My press release for Angel Donor. Feel free to share. If you do, please comment with the link and let me know and I will comment on your blog where the release appears.

New Children’s Book Geared toward Children in Need of Organ Transplants

FOR IMMEDIATE RELEASE
Philadelphia, Pennsylvania, United States of America

July 1, 2012

On June 6, 2012 children’s author Jennifer Gladen’s third children’s book was released from Guardian Angel Publishing. The new book, Angel Donor, is a story about a child in need of a liver transplant and the day she gets “The Call”.  As taken from the cover: Olivia never asked to have a disease like Biliary Atresia. It made her liver sick and only a transplant will make her better. After waiting several months and close to losing hope, she gets the call she’s been waiting for. The journey of her life is about to begin. The book is complete with a glossary and a list of resources for dealing with transplantation.

When asked what made her write this book, Ms. Gladen said, “It was inspired by my daughter. When she went through her transplant and the long wait beforehand, I was looking for something to help her understand what was happening that spoke to her on her own level. It’s a book that needed to be written.”

In addition to Angel Donor, Jennifer Gladen has two other books out titled A Star in the Night and Teresa’s Shadow. She is also the founder and Editor-in-Chief of the online magazine My Light Magazine.

For more information about Angel Donor or author Jennifer Gladen, please visit her at www.jengladen.com or http://www.facebook.com/AngelDonorBook

Find Angel Donor at Guardian Angel Publishing

Angel Donor is now available directly through my publisher, Guardian Angel Publishing. What better place to get the book than directly through the publisher? The direct link is http://www.guardianangelpublishing.com/angel-donor.htm . Be sure to browse the rest of the site and see what other top notch books they have.


Here's a sample from the book - also shown on the publisher's website:

If you get the book, please be sure to tell me what you think of it. I'd  love to share your comments and reviews. 

Welcome to Angel Donor 's Blog

When your child had any medical problem, it is hard. But it is even more tough when a serious disease occurs which results in the need of an organ transplant. Many families deal with this situation - more than I care to admit, including my own family. My daughter needed 2 liver transplants and my son is a kidney patient who may need a new kidney in the future. Which is why, in part, I wrote the picture book Angel Donor and created this blog. The goal is to of course raise awareness of organ donation, but also to provide support and validation to others going through the same things. May this blog and book be helpful to you. Feel free to leave comments about the book. I would love to share them with my readers to help let them know what the book is about and what other readers thought of it.