Back at Primary's

We thought we still had a little while before winter and the sick season begun, but we were wrong. Landen went to the ER on Tuesday afternoon for respiratory distress and fevers. We knew he had ear infections in both ears, but he was labored in his breathing, so I took him in. He was admitted that night. Last night, Wednesday, we found out what had been causing the continuous fevers and the labored breathing. He tested positive for EBV or basically mono. They are starting an IV med to help him fight the infection and lowering his immuno suppressing medicines as much as possible. He is hanging in there, but he is ready to leave this room. He just cries and points to the door. Luckly, in a way, that he is very tired, so most of the day is spent sleeping.

The Donor Family

A couple days of after Landen's transplant, Joe and I wrote a thank you letter to our donor family. To our amazement and happiness, weeks later we received a letter back from the donor family. It was an amazing letter telling us about who this wonderful gift came from. Since then we have been in contact with our donor family via email. This last week our donors father, Troy, gave me permission to link our families together through the blog. We are in awe of this amazing family. They have been through so much and through it all they have been willing to share there lives with us. We are so grateful for there willingness to first donate, but also keep in touch with us. I cannot image all they have gone through and will go through, but we thank them for letting us know who Landen's heart was from.

Landen's new heart, his heart of a lamb, is from a 5 month old baby girl named Claire DeJoode. On Thursday, May 6th at 3:30pm, while Troy was at work a pick-up truck blew threw a stop sign and T-boned the family mini-van. The tragic accident left the mother in a coma, the 3-year old boy hospitalized with neck and ankle injuries, and the 5-year old boy Carson and 5-month old baby girl Clarie hospitalized with head and neck injuries. That night a decision had to be made about Carson and the next morning for Claire. Troy said "that regardless of the hospital's medical technology or my own willingness to do anything, go anywhere and spend everything I had, he (Carson) would die. The only question was what his legacy would be." Troy signed off for both Carson and Claire to be donors. Through these donations, many people, Landen among them, were saved.

Among the recipients:

A 5-month-old boy received Carson's liver.

A 52-year-old mother who has been undergoing dialysis three times a week since November 2007 received Carson's left kidney.

A 50-year-old mother of six who has been in dialysis for more than two years received his right kidney.

Two children received Carson's heart valves.

An 8-year-old girl and 40-year-old man received Carson's corneas.

A 3-month-old boy who was in end-stage heart failure received Claire's heart.

An 11-month-old boy received Claire's liver.

A 51-year-old mother received Claire's kidneys.

Read More: http://wcfcourier.com/news/local/article_e7ae56e4-d08b-11df-85e5-001cc4c03286.html#ixzz1T4D2gGWu

I will never forget in the first letter we received from Claire's father, Troy, he wrote about the organ donations talking about his 5 year old son Carson, "It was not an easy decision but I came to realize that this was his chance, in death, to be the hero that, in life, he knew himself to be." These two kids along with their parents and countless others that made this transplant possible are heroes and will never be forgotten. We would love others to read their story and see the little girl that is now part of my son.

The end of Troy's letter still brings me to tears. He wrote "The heart that Claire gave is Landen's now...I would encourage you to never feel guilty for receiving our daughter's gift. It comes with no strings attached. Lion needed only to ask for it. We hope that he will use it to the fullest that he can for as long as he can. We ask only that he use it to the best of his ability." We will take that promise. He will and we will cherish every moment of it. Our prayers will forever be with the DeJoode family as our lives are now connected through this tragic accident.

To read Carson and Claire's story to go these links:

http://wcfcourier.com/lifestyles/announcements/obituaries/article_1a054774-5ea4-11df-8124-001cc4c002e0.html

www.kcci.com and search for DeJoode, or google “Heather DeJoode” or “Claire DeJoode.”

Our Little Lamb

As most of you know when Lando recieved his new heart last year on Mother's day, the donor family also sent a stuffed animal...a little lamb. In rememberance of our donor our kids made a little lamb at build a bear. We decided that each year we would do this and give the stuffed animal to someone who was in need of hope. This little lamb gave us so much hope. That night that we recieved the lamb, it gave us strength to get through the rest of Lando's 6 hour surgery and it gives us hope each day we see it. This year we gave it to a family friend who had just been diagnosed with terminal cancer. She is an amazing person. She came in visited us all the way from California between chemo treatments when Lando was still in the NICU. She gave us so much hope while she was here that week. Our family frind, Brenda, unfortunetly lost the battle with cancer one month later. Her lamb that we sent her was on her dresser that whole time and also was at the memorial. Brenda we love you and we are glad that even for that week, our little lamb gave you hope.

1st Annual Heart Cath

What a great day for us. Landen had his annual heart cath and NO REJECTION. We are so grateful. Dr. Grey, who did the heart cath, said it looked a lot better than last time and that everything looked perfect. The word "perfect" is not something that we are used to hearing, so it was great to hear. We are all so glad that things are going so well. Landen is progressing so well. He is crawling and walking with his walker everywhere. His physical therapist said we will have to take the walker away soon because he is too good with it. We also found out that he can climb a flight of stairs, so we had to find the baby gates. Also, along with the heart cath he also had a hearing test. With his syndrome, he has 20-30% of going deaf during childhood. Because of that he has to do a hearing screen every year. The audiologist said his hearing was "perfect". It was such a great day with wonderful news. Thank you to all the doctors and nurses and, of course, the transplant team who have made this such an amazing year. We love all of you! We are also grateful for our son who has fought and worked so hard this year. You are amazing Lando! And also a thank you to our donor family who saved our sons life.

Welcome Spring

My good friend let me know today the good news...today is the first day of spring. Wow, I never knew I would be so excited to be done with winter. Although it still seemed like winter with how much coughing there was at church today. Well, things have been going really well. Landen is looking great, gaining weight, and his heart is doing great. He is starting to walk along all kinds of furniture. He still refuses to crawl, but I am convinced he could do it, but he just doesn't want to. All in all things are going great. We could not be happier. Just to give you a preview of things to come in the next couple of months. This month we have more hearing tests. There is about 20-30% chance that Landen could lose his hearing anytime during childhood, so we have to continue to check him for hearing loss. He seems to hear well, so that is reassuring, but they have to do more hearing test while he is asleep. We also in May have an eye appointment to make sure nothing is structurally wrong with his eyes. He tracks well and seems to see fine, so that too is reassuring. Also in May we have our yearly heart cath. I can't believe it, but we are almost one year post-transplant...what an amazing year. So, we have a few appointments coming up, but "it is all good." As you can see, the kids absolutely adore their little brother...KoKo a little too much. Although lately he is into biting and his favorite person to bite (or the one that doesn't more there hands, legs or toes out of Landen's mouth) is KoKo. She always says "LANDO" in her meanest high pitched quiet voice. It is sad, but it almost makes me laugh every time...

Happy Birthday Landen...

As mentioned in the previous post...Landen celebrated his 1st birthday last week. We had hoped that he would have eaten his cake (I even made him two kinds because I was not sure which he would like). But with two infections and a fever...I wanted nothing to do with cake, or any food. Although his birthday was not as we had planned...we are so grateful for it. Almost one year ago I was so excited to finally take my little boy home. He had been in the NICU at Primary's for 9 weeks. It had been the longest 9 weeks of my life (up until that point...transplant list seemed even longer)...Anyhow, I was getting ready to bring this little guy home. We still knew that he had a long way to go, but we thought we were improving since we were able to bring him home. As I sat there with him in my arms waiting for Joe to come so we could finally bring him home his cardiologist for that week came in. I know she had good intentions, but it was still hard to hear. She asked me if I knew the long term plan for Landen. I told her that I thought I did. She then told me that they did not think he would last a year. That was the first time him not making it was directly mentioned. I, of course, started to cry. I knew that we had a long road, but for some reason I was not prepared to hear that my baby probably would not make it. I understand know that I needed to know the severity of his case. I needed to know how bad his heart was. In a way she was correct. His old heart would not have made it a year...but last week we were able to celebrate his 1st birthday. We are so proud of the little guy. He has fought hard and continues to fight. He is an amazing little miracle. And we can't wait to celebrate many more birthdays. Next birthday...3 kinds of cake and he better at least try it. Happy Birthday Landen...
PS Pictures will be coming soon.

Is Winter Over Yet?

This winter seems to never end. I have never particularly liked winter...it's cold and it snows a lot, but never has winter seemed so bad as this year. Winter now not only means cold and snow...but germs and sickness. Because Landen is so immuno supressed, he seems to catch everything. We don't even really leave the house and he is still sick too often. Poor little guy celebrated his birthday with 101 fever, an ear infection and a bacterial infection in his stomach. Not really the best mix to have him actually eat his birthday cake. He is such a tough little guy. He spent the whole weekend with a fever over 100 with tylenol every 4 hours. But, Sunday evening he seemed to break the fever seemed to break. The hardest thing about him being sick in not knowing what it is. It is funny that hearing he has some kind of an infection is actually relieving, but it is. I mean I still feel bad for the little guy, but at least it is not him rejecting the heart. The signs of rejection are similar to any kind of cold/flu or infection (increased heart rate, temperature, vomiting,...) It makes for a lot of worry and of course prayers. I am not sure how our amazing doctors and nurses know when to worry and when it is okay. We are just so grateful for the amazing care we receive. So, to sum it all up. Landen is doing well. He seems to catch colds and develop infections, but he gets through them. We are so looking forward to the end of winter and the end of isolation.

Wonderful Days

Just thought we would give a little update on Landen. He is doing amazing. He spent a couple days in the hospital last week with a bacterial infection in his stomach. They put him on antibiotics and he was able to come home the next day. Since he has been home, he has been doing amazingly. He is no longer throwing-up (going on 5 days now). Since his transplant in May he threw up at least two times a day. In those nine months there was only 2 days that he did not throw up, but now we are going on six straight days. We are so grateful. We are so glad he is feeling better. I am also grateful to not wake-up each morning to Landen throwing up on me. His smiling face is way better to wake up to. We are so grateful to the amazing doctors at Primary's, especially the transplant team. Thank you. To make matters even better, Landen is eating again. We are just so grateful for this progress. We thank our Heavenly Father everyday for his continued blessing on our family.