MOMMY PLEASE.....

Well, I just might win the worst mom award tonight. I had been out to get my hair cut and went to dinner with a friend and didn't get home until about 8:45. It seems that Nathan went to bed without taking his evening medicine. You might think, well that's okay, take it in the morning. But, no, it does not work that way around here with Nathan. We never miss his meds because they are so important for the health of his transplanted liver. His most important medicine is his Rapamune (anti-rejection) which he takes in the morning. He has never missed a dose of it. Two times a day he also takes an anti-viral drug to fight this little virus (EBV) that he has. Tonight he went to sleep without the anti-viral. It probably would not be the end of the world if he didn't take it till morning, but it was only 8:45, and he had only been asleep for 30 minutes. So let's just say I was determined that he was going to take the medicine. Nathan had other plans though. He is a very heavy sleeper, and he absolutely refused to wake up. He moaned and he groaned and cried MOMMY....many, many times. Then he got really upset and just cried and cried and cried. I would stand him up, he would lay down on the floor and cry. He would get back in bed and cry some more. All the while I keep after him to just PLEASE swallow this one syringe of medicine. At this point it might have been more productive to just let him sleep. We literally fought over it for about 30 minutes. Nathan is the most strong willed person I have ever met (those of you who know him I'm sure will agree)! All the while, I don't think he was ever truly awake. Then it really hit me. I just had this wave of sadness come over me. All I could think was, how sad that he has to take medicine each day that is so important for his very survival. How sad that I can't just let him sleep when all he wants to do is sleep. Trust me, I am not feeling sorry for myself or him. Quite the contrary. I am abuntantly thankful that he has medication that he can take every day that helps his body to accept his liver and fight infections. It's just that as much as I like to think that everything is back to normal around here, it never really is. Every now and then I am reminded anew that this is a life long journey for Nathan. I sometimes just wish that he could have one day of his life without medicine. But that just is not in the plan. And that's okay. I am long past the point of questioning all of this. I feel better just getting it off my chest though. By the way, he finally took the medicine and drifted right back to sleep. I feel certain he won't even remember it in the morning. Now if I could just forget....

Nathan's One Year Anniversary

Today is a milestone day for our family, particularly Nathan. It was one year ago today that Nathan received his liver transplant. We received the call on Christmas day that a liver was available for him. We had been celebrating the day at Aunt Melinda's house when we received the call. It came as a total surprise even though Nathan had been waiting for a little over a month. We had no idea when the call might come but it was none too soon. Nathan was becoming sicker and sicker. Here he is on Christmas night at UAB waiting to go to surgery.

The picture below is on December 26, 2007, just a few hours after his surgery was completed. Today we are celebrating the gift of life he was given one year ago. Nathan has had a wonderful year of good health with only a few bumps in the road. He is enjoying second grade. He loves his dog, Sunny. He is a huge fan of Star Wars, Indiana Jones, Chronicles of Narnia and of course Scooby Doo. Today and throughout the past year it has been hard not to compare each occasion to the one a year before. Nathan's birthday, the start of summer, Halloween, Thanksgiving and Christmas have all given us reason to celebrate. We celebrate Nathan's life. We contemplate how much different this year is than last. We are now concernced with normal stuff, not life and death. We think about the gift of life given by an organ donor and we wonder about what the donor was like and we think of his family. We thank God for loving us and for all of our blessings. Today especially I can't help but remember all of the many people who have loved us and supported us throughout the year. All of those who spent the night at the hospital with us while Nathan was in the surgery and those who took care of every little need we had over those first days, I will never ever forget their kindness and their presence. Nathan actually remembers the night he went to surgery and he remembers so many people who were there and he remembers playing jingle bells on the guitar and singing for everyone. It was a tremendously special night for us and I will never forget the prayers that were lifted up for him. Happy first liver birthday Nathan.

All of the pictures below are from our Make-A- Wish trip to Give Kids the World and Orlando. There were so many pictures I could have included, these are just a few.

It was cold and dreary when we left Birmingham and we packed way to much stuff!

All of the boys were able to go to the cockpit and meet the pilots.

Nathan even got to wear the captain's hat.

Florida was sunny, 80's and beautiful.

Our first day at Disney.

Nathan was thrilled to meet Scooby and Shaggy.

Curious George is another favorite.

Stephen and Harrison with the guys from The Mummy.

At Give Kids the World, Nathan was given a star by the star fairy. He was able to write his name on it and then it was placed on the ceiling in the Castle of Miracles. He was then able to go and find it on the ceiling. His is the last one here on the third row. The room is absolutely beautiful with a star present on the ceiling for each child who has stayed there.

The village had a great heated pool and the boys enjoyed swimming in December.

Each day different characters came to Give Kids the World so we avoided the long lines at the parks to meet them. Here is Goofy, Mary Poppins and Pluto. Pluto is Nathan's favorite.

All of us with Mickey and Minnie

Santa came to visit on Thursday night and gifts were passed out to all of the children. We even had snow in Florida on this special night.



This is the street we stayed on. Our villa is the one on the left. It really is a little village filled with families who have children who have all been through, or are going through amazing challenges. It is such an wonderful place. They go out of their way to make the kids feel special and give them a week of no worries and only happy memories. The very first thing they did was sit us down to go over a few things, and the volunteer told Nathan that he was the boss for the week and that we had to do whatever he wanted to do. Kind of scary, huh? I was a little worried, but he didn't let it go to his head. I know that they do this on purpose to let these children feel like they have a little control in a life full of medical challenges. For Nathan, a life that revolves around us telling him when to take medicine, when to have labs done, go to the doctor, etc.. The village also has a free ice cream shop open all day long. How great is that? The village is staffed by some regular employees but mostly the place is run by a staff of volunteers. The volunteers range from older adults living in the area to college students performing community service, to youth groups spending a week serving others. Truly amazing. I wish that I could tell you all about the place and the many special things that made this trip so wonderful. I just don't have enough space.

This picture was taken yesterday on Christmas day. I love these boys dearly. Wow. What a difference a year makes. Thanks for reading if you made it this far. Merry Christmas and Happy New Year from the entire Shelton family.

...Busy I guess!

Well, it has been a while since I have posted anything. I can't say exactly why - just busy I guess. After several months of doing great, Nathan has had a couple of set backs this summer. Nothing unexpected post-transplant- CMV infection, fever off and on, low blood counts. This has led to a couple of hospital stays and frequent clinic visits for labs and such. The good thing is - Nathan has felt great throughout it all. We've enjoyed time at the lake. We added a new addition to our family with an adorable golden retriever puppy named Sunny. We went on a wonderful vacation to the beach which Nathan (and all of us) thoroughly enjoyed. So I would say all in all we have had a pretty fun summer. I was quite surprised last week when Nathan's labs were abnormal and he was unable to start back to school due to his increased risk of infection. Tomorrow we head back to clinic once again with hopes that things are improved and Nathan will be able to start second grade on Tuesday. The first few months after transplant I was surprised at how easy (relatively speaking) everything seemed. Of course it still seemed huge to think that Nathan had received a liver transplant and the medication regimen was an adjustment. But I have come to see in the last couple of months that this first year after transplant is kind of like a roller coaster ride - lots of highs and lows and it really is a whirlwind. I keep hearing that after the first year things tend to settle down. Hopefully things will settle down for him before that one year mark. Nathan is such a blessing though, as are all the boys. He has such a sweet little spirit and finds tremendous joy in the smallest things - finding sand dollars on the beach, waiting on the "ice cream man," spending hours playing with Sunny, bird watching in the park. What an amazing little boy he is and I am so thankful for the gift of life that he has received that has allowed him to have such an enjoyable summer - even despite the little bumps in the road.

Pictures!

I thought I would share a few pictures from the hospital. Nathan is very glad to be home. We go back to transplant clinic in the morning to see how he is doing, recheck labs, etc.

Happy Father's Day to all the dads out there. Nathan, Harrison, and Andrew are very blessed to have a wonderful daddy who loves them very much and takes great care of them. Happy Father's Day Stephen!


Nathan sleeping at the hospital


Getting ready for biopsy

On his way!

Waiting to go home

Home!!!

We are finally home from the hospital after 8 days! We are so very happy to be here. Nathan's biopsy showed no rejection, just inflammation, which is thought to be from the CMV. He is on the road to recovery and feeling much better. He will be treated for 2-3 weeks with an antiviral. Thank you for your prayers. I will try to post some pictures soon.

Prayers for Nathan

Nathan will be having a liver biopsy in the morning around 8:30. It is most likely the CMV that is causing his liver numbers to be abnormal, but a biopsy will determine if he is having rejection. On one hand I am not worried because I think that after all Nathan has been through, a biopsy is minor. But, I know that it is still an invasive procedure and he will be put to sleep. This always brings a certain amount of anxiety. Please pray for Nathan, for good results and for all of the people that will be caring for him.

Nathan And Harley!!

Nathan has been in the hospital since last Thursday with a viral infection called CMV. CMV is fairly common among the general population but can cause more symptoms in transplant recipients because of their immune suppression. The only symptom Nathan has had is fever. He is doing very well and he is on his second full day of treatment. He will be coming home as soon as his fever is gone. He has been feeling pretty good though, and I must say that the hospital is a pretty boring place when you feel good. Yesterday, he wanted to go and walk around and the play rooms were closed and we just could not find anything to do. Finally, we went and bought a popsicle in the cafeteria and sat in the lobby of the hospital for a change of scenery. While we were sitting there, a group of Harley-Davidson riders drove up on their bikes. Two very nice men came over to Nathan and gave him his very own Harley-Davidson dog and his very own doo-rag to wear. He also went outside, IV pole and all, and sat on one of the bikes and had his picture made. It was great! Who knew such a boring morning could turn out so fun after all. Check out the picture of Nathan with his dog. By the way, he named the dog Harley. Very original, huh?

Hello Again!

I am not sure if anyone out there is still checking in. I am sure it has seemed as if I had given up on my little blog. I don't know about you all, but May has been the busiest month with all of the end of the year get togethers and parties. It is almost as busy as the month of December!


I have been thinking about what to write about, and there are a number of things I could share with you from the past month. We spent several days at the lake last week for Memorial Day. This was our first time at the lake for the summer. For those of you who don't know, the Shelton's love the lake. We have a place on Smith Lake, and we try to stay there as much as we can during the summer months. All of the boys love the water and have grown up swimming and spending summers at the lake. Last summer when Nathan was being evaluated for transplant, we learned that he would not be able to swim in the lake after transplant. This will sound crazy - but of all the things I heard that day, this probably made me the most sad. I realize in the grand scheme of things, this should have been the least of my worries. And I have been able to put things in perspective since then. But, with the first lake visit of this summer upon us, I wondered what it would be like for Nathan. He has always loved to swim, swim, swim - probably more than anyone else in the family. I must say that he was really great though. The other boys swam, rode the inner tube and all the usual stuff and Nathan did not complain. For those of you who know Nathan well, you know that he is extremely strong willed. If he wants to do something bad enough, he can make it hard for everyone with his fussing (I say that very lovingly)! But he was great. There were times when I could tell that he was disappointed and he would quietly say, "I wish that I could......" It did make me a little bit sad that he couldn't do things that he has always loved doing. Nathan found so many other things to do, thanks primarily to my dad. Nathan got to ride in the canoe, go on a late night fishing trip, play in the sprinkler, play in the sand.... all of these things were a treat for him and made him feel special and not left out. I thought that I would share a few pictures.

Now that I have told you about our Memorial Day - I have to tell you that I was looking for a new song to play on the blog, and I came across a song by Steven Curtis Chapman that I had not heard before called Moment Made for Worshipping. I think that God led me to this particular song. I never intended for anything I said above about swimming or not swimming to be negative, but I think this song was a gentle reminder to me that each and every moment is special. Our summer may be a little different from before, but often times we can learn fun, new things when given the opportunity. Nathan may find lots of new interests that he can enjoy. I am so very thankful that we are able to have fun, happy and healthy days. This was not a reality for us just a few months back. Each and every day, each and every moment we are given is special and is a moment made for worshipping, a chance to be thankful for the blessings in our lives. It can be easy to get caught up in our worries and in the day to day things of life. I know I struggle with this. But isn't each and every day a gift? When you might be tempted to do a little complaining this week (like me!), remember the words of this song and take a moment to worship and thank God for the blessings in your life. Check out the words below:

6:30 Monday morning
I'm here hiding in my bed
A song plays on my alarm clock
As I cover up my head
And somewhere in the distance
I remember yesterday
Singing "Hallelujah"
Full of wonder, awe and grace
But now I'm just wondering
Why I don't feel anything
At all
CHORUS:
This is a moment made for worshipping
Cause this is a moment I'm alive
And this is a moment I was made to sing
A song of living sacrifice
For every moment that I live and breathe
This is a moment made for worshipping
When I'm praying with my children
As they're running off to school
When I kiss my wife good morning
Just to say I still love you
When I'm feeling loved and happy
When I'm feeling all alone
When I'm failing to remember
All the love that I've been shown
Every single beat of my heart
Is another new place to start
To know
CHORUS
Every single beat of my heart
Is another new place to start
Right now
CHORUS
From the rising of the sun
To the setting the sun
The name of the Lord is worthy to be praised

Organ Donation Video

Stephen helped me put together a short video for a talk I am giving on organ donation. I thought that I would share it with you. You will need to mute the sound on the play list at the bottom of the page in order to hear the music with the video. Have a great day! Lora

Celebration of Life

Last Saturday, April 19th was the Celebration of Life Picnic at UAB. This is an annual event for organ recipients, donor families and family and friends. I had been looking forward to the event for a couple of reasons. For one, I really wanted to see a large number of recipients gathered together. I know that there are lots of organ recipients out there but at times it seems as if Nathan is the only one. This gathering reaffirmed to me that he is part of a larger community. It was also really nice to see and meet others who are several years post transplant and who are living full lives. It gives us hope for the future.

It was also a great opportunity to honor the many donor families who were present. Several families brought hand made quilt squares to represent their loved one and to hang on a memorial quilt. It was so touching to hear moms, dads, husbands and wives speak. There were many present who had lost their loved one during the past year. They were obviously grieving for life that was lost far too soon. There was one father who spoke that particularly touched me. His son passed away in November and became an organ donor. He had only recently graduated from college and had married to a wonderful young woman (she was also present). He had been married for a few short months when he lost his life in an accident. This family was obviously devastated. The father spoke about how for the very first time since his son's death he felt a sense of peace from seeing all of the organ recipients living life. It of course did not take away his grief, but he said that it helped to see that his son's life and donation will leave a lasting impact. Hearing stories such as his make me even more thankful for Nathan's donor and donor family. His donor was a 16 year old young man who also lost his life far too soon on Christmas day. Somewhere I know that his family is still grieving. It especially makes me aware of the need to always live our lives in a way that is worthy of the gift of life that we have been given. Of course we should always do that, but this was my reminder. After each of the donor families spoke, butterflies were released into the sky as a way to honor the donors and as a reminder that life is fleeting for each and every one of us.



The picnic was also an opportunity to encourage organ donation and to celebrate life. To see all of the people affected by organ donation, just in our area was very humbling. It truly makes the impact of organ donation real. I hope that we all celebrate life each day. It is not just about those who have received the gift of life through organ donation. It is all of us. For our family, the past few months have made us more aware of the frailty of life. There are things that I could worry about or be stressed about, but I try to stop myself. I think I have a new sense of what is important and what is not. So much of what we fret over is just trivial in the grand scheme of things. I know that for sure. So whether you have been affected by organ donation or not - celebrate life today.