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.

Home Sweet Home

We made it home from Disney and had an absolutely wonderful time. I thought I might post some during the week, but we did not have wireless access in our room. I would have had to walk to the front check in / guest area which was a nice little walk down the road (and after walking all day at the parks, I just couldn't walk anymore!). I can't wait to tell you all about it and post some pictures (hopefully tomorrow). We stayed at Give Kids The World which is an amazing place. They work closely with wish organizations like Make-A Wish who sponsored Nathan's trip to Disney. I am off to unpack and get some sleep. Tomorrow I might actually start my Christmas shopping then I will post again with some pictures. Good Night!

Disney World Here We Come!

Well - tomorrow is the BIG day! We are leaving for Nathan's Make-A-Wish trip to Disney World. We can't wait to tell you all about it. We will try to update some during the week.

Stephen and Lora

Halloween Pics

Check out the boys all dressed up for Halloween. Harrison is Dracula. Andrew is a race car driver and Nathan is none other than Scooby Doo.

Two Posts In One Month! Wow!

Two posts in one month - what's the world coming to? Yes, I know it is rare that I post very often these days, but I have something to share today. Last night our family had the most amazing experience. What could it be you say on a Wednesday in the middle of October? Well, we arrived at church last night and saw a swarm of people wearing red t-shirts lining the walkway into the entrance of our church. Immediately the boys starting asking, "Who are all those people? Is there a party?" Harrison actually asked, "Is it my birthday party?" We had to say, "No Harrison, remember your birthday is in February. IT IS ONLY OCTOBER!" But, you can't blame a boy for wishing I guess.

Wishes. Hmmm. A while back I had a post about Nathan's night serving ice cream for the Make-A-Wish foundation. But, I didn't actually tell you his wish. He wished to go to Disney World at Christmas. Those of you who know Nathan know that he absolutely loves Christmas. As soon as we take down the pumpkins, he will start thinking about decorating his room and his own special Christmas tree. I can't think of a more fun time for him to go to Disney World. So after we saw this big group of people at church, guess who else we saw?

If you guessed Mickey Mouse, you're right! Mickey Mouse comes walking out into the parking lot to give Nathan a big hug. Yep, it seems that Nathan's wish is coming true thanks to the Make-A-Wish foundation and the girls of Chi Omega Sorority at Samford University. These amazing young women are sponsoring his trip. I have gotten to know several of the girls personally this year and I have been blessed to know them and work with them. They threw us a party, complete with surprises for all the boys, mickey mouse ears, dinner, treats, and a very talented man who made balloon creations, including the best goofy, mickey and pluto ever! We also had all of our family there with us as well of some of our very best friends. We were also surrounded by our wonderful church family who has supported us all along the way of our journey with Nathan. I can't imagine a more special place to have received this gift.

Needless to say, the boys are on cloud 9. Getting to bed last night was almost impossible. I did have to explain to Andrew that the trip is a few weeks away. I think he might have thought we were leaving last night! So now we will start counting down the days. Disney World here we come!

Did I tell you how incredibly humbled and blessed we feel? It really feels strange to be going on a trip that someone else has provided for us. But I am so happy and proud for Nathan. Looking at him now, you would never know what he has been through over the past year and a half. I know others have been through so much more. But he has endured 8 hospitalizations, one huge transplant surgery, 2 liver biopsies, many outpatient procedures, I can't even count the number of physician and clinic visits and blood draws. I hope much of the hard stuff is behind us. I feel almost certain it is. Nathan is now living a full and normal life. He is doing normal 7 year old things like playing soccer, attending 2nd grade and playing with his puppy, Sunny Dog. But I think of this trip as a reward for him for all that he has been through, helping him to make happy memories from an experience that hasn't been so much fun for a little boy. I know that he will have an amazing time. I think the boys are perfect ages (9, 7, 4) to remember this trip forever. They will also remember the incredible generosity of a wonderful group of women at Samford Unviersity. They will remember the love and support of their church family and their grandparents, aunts, uncles and friends. At times it is hard to fathom the generosity of others. During the most difficult life events the love, support and care of others is abundantly evident. So with grateful hearts we say, THANK YOU CHI OMEGA, THANK YOU MAKE-A-WISH, THANK YOU LIBERTY PARK BAPTIST CHURCH. We love you all and can't wait to share memories of our trip with you.

Blessings,
Lora

Blessings

I thought I would share a story with you from this week. On Tuesday night I had the opportunity to go to the UAB Townhouse apartments and visit with some of the families that are staying there. Since I first heard about this ministry a while back I have wanted to take part. The Medical Apartment Ministry is a service provided by the Birmingham Baptist Association. The apartments are for patients and families who are receiving medical care in the Birmingham area but who live out of town. I had heard that there were many transplant recipients and those waiting for transplants who are staying there. I know that there are others as well who are receiving long term care of some sort, whether it is cancer treatment or something else. I feel that our family has been so blessed to have Nathan's transplant here in Birmingham. This has allowed us to stay in our own home near our families and support system. We have been able to continue working and really to live our lives rather normally. But many folks, particularly those who may experience complications post transplant or those who need to be near the hospital in order to wait on transplant, have to pick up their lives and leave their family, friends, church family, jobs. I can only imagine how hard that must be. So long story short, I wanted to visit with them and maybe offer encouragement to someone.

As I sat down to eat dinner, the man sitting next to me asked, "Are you a recipient or family member?" It caught me off guard a little bit because my plan wasn't really to talk too much about myself and our story. So I proceeded, "Well, I am here with.....but I am a family member of a recipient. How about you?" This wonderful man and his wife then proceeded to tell me about their son who died unexpectedly 2 years ago at the age of 18 from a brain aneurysm. He then went on to tell me about how his son was an organ donor and he was so proud and honored. You may be thinking, "Well why was he there?" because I was thinking the same thing. This mom and dad were there to support the recipient of their son's heart who has been staying at the apartments since her transplant almost 2 years ago. Can you imagine? They have also met the recipient of their son's lungs, pancreas, liver and one of the kidneys.

Now for another part of the story. I have wanted to write Nathan's donor family. Many of you know his donor was a 16 year old boy who died on Christmas day. I have thought about what to say. I have pondered over it. There are so many emotions. For one, it is almost impossible to express our extreme gratitude. Our gratitude for the gift of life. The gift that saved Nathan's life. Think yourselves for a minute about trying to put that into words. It is no easy task! Aside from our relationship with our heavenly Father I can think of no greater gift. On another note, there are also thoughts about how the family might perceive the letter. Will they be happy to hear from you? Have they been waiting? Will it bring back sad memories for them? Will it be hard for them to hear about how well my son is doing? Or, will it bring them peace? Will they feel a sense of pride and joy that their son brought life to someone else?

Last Friday night I sat down on the couch and decided to just write from my heart. Stephen was gone and the boys were busy and I decided it was time. So I wrote and I cried as I remembered the day he received his new liver and a new chapter of his life began. I cried as I thought about this family whom I don't know, and whom I may never know, who so unselfishly gave. And then when I was almost done, Nathan asked what I was doing. I told him I was writing the family who gave him his new liver. He wanted to write a letter also. He got some paper and in his 7 year old, second grade writing he wrote the sweetest few sentences. He was so excited to write and he knew what he wanted to say. We talked about buying some pretty paper to rewrite it on and then mailing our letters together. On Saturday, he couldn't wait to go to the store and pick out stationary to rewrite his letter on. But, even after all of that I still wasn't sure about mailing it just yet.

Back to Tuesday night.......This father shared with me about how much it meant to them to hear from the donor families. They wanted to know what the recipients were doing. They wanted to know that they were doing well and that they were well cared for. He said they have found all of the recipients but one and he said it is his mission to find that person. He also talked about how he felt he had found his calling in life sharing with others about organ donation. He speaks at local hospitals. He talked about how he was never much of a public speaker, but he can now get up and speak about his son and about how donation has been such a blessing for his family as well as those who receive the life saving transplant. I felt so humbled to sit next to this family. It was as if I could have been sitting next to Nathan's donor family. As I left I thanked him for helping me. He hugged me and told me to mail my letter that the family was waiting to hear from me.

I have to say I feel like God was speaking to me Tuesday night. It's funny, I thought I might be offering encouragement to someone else, but I think I am the one who came away extremely encouraged and blessed. I was reminded that we are never placed anywhere by accident. God always goes before us and has a plan for us in each and every situation. I am so thankful for this family. Please pray for them and for the many others who are staying in the apartments. Many are healing and have had very long journeys and still face long journeys ahead. There are 2 who are waiting on transplants now - one for a heart and one for a lung. Within the room I could tell that there was such hope but also hearts that were hurting and in constant anticipation of an unknown future. I know a little about that. It is a very hard place to be. Of course none of us know our future from one day to the next but I think you probably know what I mean. Our journey to transplant was short but for others it has been years in the making. They need our prayers.

Pray for Nathan's donor family as well. I often wonder how they are. Our lives are getting back to normal now. I wonder are theirs? Join me in lifting them up in prayer today.

Blessings,
Lora

Lots To Be Thankful For

Well, it seems I just pop in every now and then to post on the blog. I just can't seem to get it all together lately - work, managing things at home, soccer schedules...It has really been a struggle. But before I get too carried away complaining about how hard I think my life is.... I must stop myself and be reminded of how much I have to be thankful for. I have found myself being rather grumpy lately and a little bit of a complainer and probably not all that pleasant to live with (Stephen if you read this - please don't agree too whole heartedly!). And to be honest I am really kind of ashamed of myself. So....

For one, Nathan is doing amazingly well and is loving school. Over the summer Nathan had some serious health issues and a couple of hospital stays. He was not able to start school on time. But now things are much better. He is such a trooper and I should learn a thing or two from him about not complaining! When I think about the grace with which he has handled this past year, I might really shape up the bad attitude I have had of late!

I think Andrew is the sweetest little 4 year old ever (maybe I am a little partial). He is so excited about 4K. He actually wants to do "homework" every night like his big brothers. Usually, assigning him to write his name a couple of times is sufficient, but it is very cute. Maybe I can remind him of that in a couple of years when he is in elementary school!

Harrison is an amazing little (big, actually) 9 year old. He is such a smart little boy and is doing great in 4th grade. He has not had any problems with his alpha-1.

I have a wonderful husband who so far is still putting up with me, grumpiness and all.

Even though I can't get the work and family stuff figured out, I have an amazing job that I am thankful for. If anyone has any suggestions on how to do it all please send them my way.

Our families are healthy.

We are able to pay our bills.

I have an amazing God who loves me and who has been very present with me and our family over the past months as we have been on this journey.

I know there is much, much more...I think that sometimes we need to take a moment to be reminded of the blessings in our lives because all the stress of the world can seem overwhelming at times. I think I feel better now.

Now on to something else. I really wanted to share a couple of pictures with you tonight of Nathan but it seems every time I try to download them from the camera I get some terrible error message and the computer shuts down. I wish I was smart enough to figure that out. But, I will just tell you about the pictures instead. I don't know if I have shared with you yet, but Nathan has been granted a wish by the Make-A-Wish Foundation (I will tell you more about that later). So last night, Nathan had the opportunity to spend some time at Cold Stone Creamery passing out spoons to customers and having a grand 'ol time as a Make-A-Wish kid for the World's Largest Ice Cream Social. He had hoped to actually serve ice cream, but couldn't reach the ice cream case! But, he thought passing out spoons behind the counter with the staff was just as much fun. Cold Stone participated in this great fundraiser where the ice cream was free and all donations were given to Make-A-Wish. It seems they are one of the national sponsers of this wonderful foundation who grants wishes to kids who have been faced with life threatening illnesses. If I figure out the computer issue, I will post a couple of pictures of the event. In the mean time, if you have a Coldstone Creamery close to you, go have some ice cream and support this great company.

I think that is about all for tonight. If you are still out there reading, please leave me a comment. I would love to hear from you. Maybe it won't be so long before I post again. Have a great weekend.

Lora

Bact to School - At Last!!

Today felt like our first official day of school. Our school system actually started back on August 14th, but Nathan was not able to start on time due to some issues he has had this summer with various viruses and hospital admissions. I have actually updated more on his Caring Bridge site about all of that. So finally Nathan was able to start school today and Andrew started 4k on Tuesday. All of the boys are in school. Yeah!!! We have a Shelton tradition on the first day of school. I measure each of the boys to see how tall they are on the first and last day of school and we take lots of pictures. It is such fun to see how much they change within a year. If we ever move, I think I will have to take the wall with me! I thought I would share a picture or two. Check out the one of all the boys with their puppy, Sunny. If you go back a few posts, you can see how big he has gotten this summer. Have a great day!
Lora

...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.

Organ Donation

I saw this video (just click on the link) posted on Liver Families today and thought that I would share it with you. It is about a young boy in Dallas who received a liver transplant from a young drowning victim. Maybe it is not the most upbeat of topics but it was certainly a reminder to me of Nathan's gift of life. At times it is hard to think of the loss of life on the other side of transplant, but it is a very real fact that another life was lost so that the life of my child (my Nathan) could be saved. I think that it takes amazing courage for donor families, who undoubtably are facing the hardest moments of their lives, to choose to give life to others. In many instances, maybe the family knew the wishes of the donor. But even so, I still imagine it is a hard decision. In Nathan's case, a 16 year old young boy (16 seems younger and younger to me as the boys get older) died in a car accident on Christmas Day. Can you imagine? I don't ever want to forget the sacrifice that they made for Nathan. I want to remember every day. Each day that he can get up and do normal things like play with his new puppy or go to the library, play with his brothers, eat ice cream or ride a bike is because of an organ donor. And of course because of our great God who is so faithful. If you have ever considered being an organ donor, tell those you love. You might just have the opportunity to give life.

Pictures Of The Day

This picture is priceless to me. Nathan puts his shoes on the wrong feet practically every day. Sometimes I think he does it just to annoy me. Now it is captured on film!


Have you ever seen anything so cute?

Blog Award!!!!!

Nathan had to be at the hospital early for labs this morning and to my surprise when I got home and checked the blog - I see that I have received a blog award from my dear friend Connie over at Laughter by Lakeside. Connie has been my very best friend for years and years and we grew up together. She truly is like family to me. We also both share a tremendous love for the lake. Connie is an amazing designer and has a wonderful blog that will provide you with a lot of inspiration for your home and family. You will enjoy her creative design and beautiful pictures of her work on her blog.

Personally, I haven't been a very good blogger this summer as we have been kind of busy. Maybe this award will inspire me to get back to blogging with more of a purpose. As I understand I get to pass this lovely award on to someone. So here goes....

Unique But Not Alone is one of the first blogs that I found when the boys were diagnosed with Alpha-1 Antitrypsin Deficiency last summer. Jen blogs about her two girls who have alpha-1. Jen is also a wonderful advocate and leader in the Alpha-1 community. Her blog has provided me with encouragement as well as a lot of educational information about alpha-1 and what is going on in the alpha-1 community. Thank you Jen!

I think that I also am suppose to share a few things that you might not know about me so let's see....

1. I have been married to my husband Stephen for 12 years now. Stephen is a minister at Liberty Park Baptist Church where we have been serving for 13 years now.

2. I am a nurse by profession and have an amazing job teaching nursing. I attended nursing school at UAB and graduate school at Samford.

3. Believe it or not I was a cheerleader all through high school. Most people are surprised by that because I tend to have a rather quiet personality.

4. I learned how to water ski at the old age of 27, which I really do not recommend. If at all possible, learn when you are young. I think it would be much easier that way (thus the pictures of the kids skiing recently).

5. I once went rappelling off of a pretty steep cliff (again, not in my nature). No one mentioned that it is best to pull back long hair. Needless to say, my long hair got tangled in the rope and had to be cut in order to get to the ground. --Not one of my better memories.

6. I grew up riding horses and doing anything outside with my dad. I still love the outdoors and love to spend summer days outdoors either in the yard, at the lake or at my mom and dad's house. There is nothing better than a day on the lake in the boat.

That is about all I can come up with. Nothing too exciting here, but now maybe you know a little more about me. Thanks again Connie for the award! Enjoy your day!

Lora

Meet The Newest Member Of The Shelton Family!!!

The boys have been wanting a puppy for a while. Actually, I have been wanting a puppy for a while. Each time we have gone to the lake this summer, Nathan has brought home a frog or a cricket in a jar to keep as a "pet." He had to wait at least 6 months after his transplant to get a new puppy. He finally reached the 6 month mark, and I was ready to trade in the bugs and frogs for a real, fuzzy pet. So I finally took the plunge and brought home Sunny this past week. He is an adorable little fur ball, a golden retriever. I hope that he will bring many wonderful, happy times to our entire family. Check out the pictures.

4th of July

Okay, I know that the 4th of July was almost a week ago but I am just now getting around to updating the blog. I have put together a short slide show of last weekend. We spent a few days at the lake which we always love doing. We were able to spend a lot of time with Connie and her family. Her little girls, Campbell and Caroline are so sweet and just beautiful! Check out the pictures (in the slide show) of her kids learning how to ski. Harrison might be mad, but I don't have any pictures of him skiing (oops!). I'll do better next time Harrison. In case you were wondering, Nathan is an excellent skiier as well but can't get in the lake this summer. I will have to share a picture with you from last summer. By the way,I love these Smilebox slide shows. They are really easy to create. I can't figure this particular one out, but the pictures don't start until 30 seconds or so into the song. I guess you get to watch the fireworks while you wait. Make sure to mute the play list at the bottom of the page in order to hear the music with the slide show. Enjoy your day and take time to enjoy whatever special blessing that God has brought into your life today. Lora

Make a Smilebox slideshow

Deeper Still

I had the amazing opportunity to attend the Deeper Still conference this weekend with Beth Moore, Priscilla Shirer, and Kay Arthur. All 3 women are amazing Bible teachers. Before the conference, I really could think of a million reasons to stay home. We have been so busy this summer between Nathan being in the hospital, doctor appointments and our trip to St. Louis. Just last Thursday Nathan was diagnosed with bronchitis after having a bad cough for a few days. Most of all I hated to leave him. I really just wanted to stay home. I am tired.

I tell you all that to say that I feel like God intended for me to be there to hear His word spoken. It seems over the last year I have felt kind of dry spiritually. Last summer as the boys were diagnosed with Alpha-1, I found myself in the midst of a spiritual crisis of sorts. I had so many questions – all revolving around Why? I found myself a little angry at God (I hate to admit that). But gradually, I came to a point where I could see and feel God’s hand in our situation. I have come to realize that God is in control of our lives and in order to face each day, our faith has to be in Him and Him only. I have come to know that all of my questions will never be answered and they do not have to be. But lately, I feel more like I have been just going through the motions of religion rather than having a true one on one connection with Jesus. After all, it is not religion that is important but our personal relationship with Jesus. I think the last year has left me kind of at the bottom of the barrel I guess. I needed this weekend to pull me back out and to give me new focus in my relationship with Christ. Maybe it is not the bottom of the barrel that I have been at but instead facing a wilderness season in my life.

Priscilla spoke eloquently from the book of Exodus. It seems that when God most wants to reach us, he places us in the wilderness. Now each person’s wilderness will be different. The wilderness is facing hardship or trial. Being in the wilderness is not fun. The wilderness can be a place where you feel alone, afraid, desperate even. It is hard to think that God places us there on purpose. But, what if that is the only way that God can mold us, teach us. When we are flat on our back, where else is there but to look up? What if during this time of wilderness we place our focus on Him? I wish I could outline for you all she had to say, but I can’t. I came away knowing certainly that I have been facing a wilderness time in my life. I guess I didn’t need a conference speaker to tell me that. But I was reminded that it is during this time that I need to most focus on Him. God has something planned for me (all of us). God wants to reach me (all of us). While I am in the wilderness, I need to “pitch my tent, camp out and don’t miss what God has planned.” Wanna join me in seeing what God can do in your life? Let's go Deeper Still...

Pictures from St. Louis

A few pictures from our trip to St. Louis....

Stephen and Harrison at the Cardinals game


A view of Busch Stadium


Nathan was more interested in eating all of the goodies


Andrew at the game


The St. Louis Arch


The small metal #4 door should have been my first clue that the ride to the top wasn't for me!

View from the top of the arch


The boys enjoying the view. Can you see the small window behind them?


The ride back down. Down let the smile fool you. This was one of the scariest few minutes of my life! But, we did make it down, although I had my doubts along the way. The boys thought I was pretty wimpy! I would not recommend the arch to those who do not like tight, enclosed spaces. I am glad I did it though. It was a fun trip.

Alpha-1 Antitrypsin Deficiency Conference

We have just returned from St. Louis where we attended the National Alpha-One Antitrypsin Deficiency Education Conference. Read more about alpha-one here: http://www.alphaone.org/alphas/?c=01-What-is-Alpha-1-Alphas As you probably know, both Nathan and Harrison were daignosed with Alpha-One Antitrypsin Deficiency last summer and this is what lead to Nathan's liver transplant. I am so glad that we were able to attend. It was a wonderful opportunity to hear about the latest research, meet top physicians who are working in the alpha-one community, and meet other families with children who are affected. Even though alpha-one is present in 1 in 3000, only about 5,000 people in the U.S. have actually been diagnosed. That seems overwhelming to me when I think that 2 of those 5000 are my children. There are about 25 million carriers of alpha-one. Stephen and I are both carriers. This means that we carry one normal and one abnormal gene for alpha-one. So each of our children had a 25% of having alpha-one (Harrison and Nathan), a 50% chance of being a carrier, and a 25% chance of not being affected at all (Andrew). I remember how I felt about this time last year. It was so overwhelming to be faced with an unfamiliar diagnosis and an uncertain future. I think that is why a conference like this is so important. It seems like the more I can educate myself about alpha-one, the better I am able to face the future. One physician who spoke at the conference said something that really stuck out to me. He said that, "You (who are affected) have to be your own expert when it comes to your diagnosis." This makes sense to me. There are not that many physicians who have extensive knowledge about alpha-one. That means I have to know everything I can about this disease that affects my children. I have to do everything I can to work towards a future where a cure is possible. So now my mind is churning with different possibilities of how I can be a part of working towards a cure. Who knows what we will come up with. But, I think as a family that we have to do something. Maybe it gives us some power over this disease, I don't know. I don't feel I can just wait on someone else to do something. Stephen has some crazy ideas on how to raise money. Of course, I am a little more practical. We'll see what we come up with. If you would like more information on how to help, you can look here: http://www.alphaone.org/help/ . I pray that there will be a future where Harrison and the many others who are affected will not have to face the effects of this disease. Now that Nathan has been transplanted, he is essentially cured of the alpha-one. But, we have traded alpha-one for the effects of living post-transplant. Now we find ourselves a part of both of these communities. Oh how I long for the simplicity we had last April....

We did a couple of fun things while we were in St. Louis as well. We went up in the arch (yikes!) and we took the kids to a Cardinals game. I will share some pictures later.

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