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.

Updates

Again, I am so sorry for never posting anything. Things are going so well. A couple of weeks again Landen all the sudden decided to eat. He is eating baby food a couple of times a day and we are ecstatic. I was getting to the point that I thought we would never be able to get rid of the g-tube and then he decided to eat. His favorite food in pureed potato and corn soup. This week he has also decided to start drinking from a sippy cup. Again, we are so excited. Things are just going so great. We are so lucky. Landen has changed our lives and we couldn't be more thankful. He is an amazing little boy with his bright blue eyes and his smile. Thanks everyone for your continued prayers and support. We look forward to a great Christmas. I think a New Year resolution for me is to start blogging more. Life is so wonderful I should be sharing it with others.

Sorry

I was just reading my friend Chrissy's blog. Chrissy and I met at the hospital months ago at transplant clinic. It turns out that her little boy who is KoKo's age got his transplant just 2 weeks after us. She has been an amazing friend and support for me. Anyhow, I was reading her blog and I realized what a bad job I do on keeping up with our blog. Landen is doing very well. I actually feel like today might be a turning point. This is the first day since transplant, over 6 months ago, that Landen did not throw up. Whatever the reason, I hope it continues to work. Again, he is doing very well and we are so happy. I think with transplant the worry will never end, but if we remember the good days and the little accomplishments we can get through it. I don't know if I have mentioned this, but I can upon this song and the words mean more to me than they ever have before. It says "I believe in Christ, so come what may." We never know what life is going to bring us or why, but it will all work out in the end. Thanks for all your support and prayers; we couldn't have made it without them.

The Quilt

While Landen was in the NICU before we knew anything about a transplant, I decided I wanted to make a quilt and have the doctors, nurses, etc. sign it. It would a quilt to remember all the people that helped save our son's life. Well, when I first was planning this quilt I thought it would be a baby size quilt, but the quilt seem to grow and grow. I think I drove people nuts with my bag of quilting squares, but this quilt turned out amazing. I love reading each square and thinking about each person that contributed so much to save our child's life. We have had the most amazing doctors, nurses, and other hospital staff. All of which contributed in saving our son's life. THANK YOU!!!!