Celebrate Life Memorial

I was asked to speak at the Celebrate Life Memorial last weekend. I was so nervous going into the event, because it would be the most people I have ever spoken in front of and it being such an emotional topic. At this event they would be unveiling the new names that have been engraven on the monument. These are people who have donated an organ or given years worth of blood. These are the people, who saved my baby boys life, amoung many others that they have saved. I am so grateful for them, but how do I express that. How do you say thank you for such a gift. This is the speech I came up with. It was not perfect, but I just hope it delivered the message. The message of gratitude and also the miracle that can come from tragedy. Copy and paste this link to watch the video. http://youtu.be/VmmNRG0-YKk

"Oncology"

Well, this has been a rather long last couple of days. We had transplant clinic on Thursday and I was expecting a great clinic visit. Landen looks and acts great. When our cardiologist came in to see him she said she did not know what to think. I was very confused...he looks great. She said heart wise he is great, but his spleen and liver feel enlarged. She decided it would be best to get an ultrasound to see how large the spleen is. His lungs also sounded crackly. I mentioned that when he takes big drinks of water he usually chokes and vomits. She decided it would be a good idea to do a swallow study. On Friday, I took Landen to do the ultrasound on his abdomen. They did find both his spleen and liver enlarged. At 5pm that night I got a call from transplant with the results, however, imaging had been trying to get a hold of me because they needed to do a few more pictures to make sure of something. Of course, this was Friday at 5pm, so that means I will have to wait through the weekend. On Monday, we went back to do another ultrasound. Come to find out they though they had seen an enlarged lymphnode, but it turned out to be his spleen. A normal spleen his age should be about 7cm, but his was 9.5cm. That evening I talked to the transplant team and they said that they wanted to consult with genetics and oncology about the results. The words "consulting with oncology" is not something no one ever wants to hear. On Tuesday, we had the swallow study scheduled and transplant wanted us to stop by on our way out. A couple of my transplant moms who are staying in the hospital with their sweet little kids were having lunch in the cafeteria so they told me to stop by if I had a minute. I thought I would say "hi" as I was waiting for our transplant team. As we were talking, Dr. E (our cardiologist) and Emily came to the cafeteria to catch up with me. They sat down and asked if it was ok to talk in front of my other friends. I told them of course, I would tell them anyhow. I love Dr. E and Emily...they are amazing. Anyhow, Dr. E said that it could be one of two things...an infection he is fighting off or cancer. She made an appointment for us to meet with oncology that afternoon. Since Landen got the Ebstein Bar Virus (EBV), or mono, last November, he is at risk for PTLD which is basically cancer. So, when Dr. E mentioned the chance of cancer I thought this was most-likely what she was thinking. So, Landen, myself and my friend Shauntelle headed up to oncology to see what they thought. After doing a physical, answering questions, and doing some blood work, we were able to meet with the Dr. The appointment seemed to go well. He thought Landen looked very good and that most patients with cancer looked sick. I asked the Dr. about PTLD and he mentioned that they were looking for Leukemia because of his syndrome and enlarged spleen and low white blood count. I was able to leave the appointment feeling a lot better. We will continue to be monitored by oncology through transplant. Hopefully his enlarged spleen will resolve itself and we wont have to see on oncologist again. I am grateful for our amazing doctors and the rest of the transplant team for doing there best to take care of our little lion. I am also grateful for prayers and the peace and comfort we can receive through them.

Annual Heart Present

As many of you know when we received Landen's life-saving gift two years ago on Mother's Day, our donor family also sent another gift, a stuffed lamb. Our donor family's dad, Troy, did not know at the time that Landen's middle name was Lion and that he from birth had a stuffed lion in his bed. He said he saw the stuffed lamb in his little girl's bed and the thought came to his mind to send it along with the other most precious gift, a new heart for our son. This gift has given us comfort both on the day we received it and everyday since. Our beautiful little donor was a 5 month old baby girl named Claire. Her and her 5 year old brother Carson passed away as a result of a car accident. Between these two amazing kids they were able to save 10 people. Troy said in his first letter to us, that his son, Carson, was able to be the superhero he always thought himself to be. These two beautiful kids are superheroes and we love them and their family dearly. We continue to have and will always have a picture of Claire and Carson and the lamb and the lion as a memory of this life-saving gift. Each year on our heart anniversary, May 9th, the kids make a build-a-bear stuffed animal and give it to someone who is in need of comfort in memory of Claire and Carson. This year the kids made a bear for a baby in England. We had meet this family over the internet on our LEOPARD syndrome facebook page. There little boy, Owen, had the same heart condition as a result of LEOPARD syndrome. At 8 months old,Owen who was clinically well, had a sudden cardiac arrest at home. He was resuscitated but he had a downtime of 33 minutes and has suffered considerably. Owen was not suppose to live through the evening, but this amazingly strong little boy fought for 8 weeks. This story hit close to home because of the similarities between Owen and Landen. Also, Owen's birthday is the same day that Landen was given a second chance at life. Before his passing we sent both him and his older brother a build-a-bear. Owen's parents are amazing. They have been an example of strength for my husband and I. They enjoyed every moment they had with their strong little boy. I am so glad that Landen has came to our family for many reasons. One of the gifts we received since we had Landen was the opportunity to meet such amazing kids and their parents. The kids that I have had the opportunity to meet or at least hear about have unbeleiveable strength and courage. I think they should all have "LION" as their middle names because of their fighting spirit. Thank you both the DeJoode family for giving us these last 2 years with our son that we would never have had. And also thank you to the Zander and Anna Sen. We admire your strength and courage through your trials.

Hotel on the Hill...

Landen had been sick for a few days...mainly fever, cough, and a high respiratory rate. So, Joe took him to a close hospital to get him suctioned. They, of course, did not like his respiratory rate so they wanted to admit him. We told them we would take him up to Primary's since they know him there and his transplant team is there. We took him to the ER and they admitted him on Friday night. He is doing well, he just needs some oxygen. We found out he has, besides Human Metapneumovirus (hMPV), he also has C-diff, an ear infection (tubes only last 1.5 months) and pneumonia. He is on a little oxygen and they are starting an antibiotic...He is doing well and hopefully not be too long of a stay. Please keep him and all the other kids there in your prayers.

Family Pictures

I think sometimes when things are going well, I forget to write down on the blog about how great life is. Why is it easier to write down when we are in the hospital with sickness than it is while we are home and things are going well. Landen is doing great, his heart and his health. We have not been admitted to the hospital since October which is a record for Landen (4 months). He is doing so well. Still delayed in talking, but he is starting to say more. His speech therapist says he just doesn't like to put his lips together, which is how you make a lot of letter sounds. He is walking and running and even trying to jump. He is happy and doing very well. We are so grateful.
Tuesday we go in to the geneticist. Hopefully, no surprises this time. Last time he told about the deafness possibility, eye problems, and skeletal problems...none of which Landen has right now...yeah!!!

Happy Birthday to Me

Well, this message is more about Landen's Heart Cath and Biopsy than about my birthday. However, because of his wonderful biopsy, I, too, had a wonderful birthday. The doctors said his biopsy could not be better, it was perfect, which means no rejection. In October the wonderful transplant team took Landen off one of his anti-rejection meds (Imuran) because he was having a hard time fighting off viruses (such as EBV or mono). By taking him off this med he had the potential to reject, but he has not. So, we get to stay on a really low amount of anti-rejection medication, which is good.
After the biopsy, I met with the transplant team. We were talking about the wonderful heart that Landen had recieved. The doctor told us, that it was a miracle that Landen received that heart, that that heart was for him. The reason it was so surprizing we recieved the heart we did was because it was so far away. Others in two other regions had to pass it up in order for us to receive it. We know that our Father in Heaven had a role in giving us this beautiful heart. I truelly believe that if we did not receive this heart, Landen would not have made it. He was in final stage heart failure and each day seemed to be getting worse and there was nothing more we could do. We are so thankful for that heart, and the baby girl that gave it to us. We are grateful to the wonderful DeJoode family for not only the miracle gift of the heart, but for the beautiful lamb they sent with it. They are an amazing family and we are so lucky to be able to communicate with them. We love you and our prayers will continue to be with them.