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

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?