Friday, August 10, 2012

Living Tall

We have watched Joshua gain a lot of mobility lately. He is moving around the house with much more speed and agility. But we are noticing something. He still walks just like he used to. He is bent to the side and pitched to the front. He holds his head to the side. At first I wondered if something was going wrong. Maybe the rods and pins have slipped and his spine is curving again? We notice if we tell him to straighten up, he can. And if we remind him to hold his back straight he least for a minute. Finally, I called the doctor and asked about it. They said that this is a very common problem. We just need to remind him to stand up straight and we will get started with some PT as well. His muscles must be retrained to accommodate his new position.

It made me often do I "walk crooked" in my Christian life? How easy it is to forget the price that was paid for me to be healed? Christ's precious blood was shed that my heart might be whole. Yet, I forget my Redeemer and walk in the crooked way of selfishness, worry, and complaining. I slip into old patterns of behavior. Maybe those sinful attitudes feel more comfortable and familiar. Just like Joshua has to be reminded often (many times a day!) to stand straight and tall, to put his head straight, I also have to be reminded. I am a new creature in Christ.  Josh's muscles have to be retrained, and I must retrain my heart and mind to think on what is true, noble and right. It is time to make a greater effort to spend time in the Word and prayer. There I know I will find the encouragement I need to live in newness of life.

And with the Lord's help Josh and I will work together to be who we really are.

Wednesday, August 8, 2012

The BIG Surgery

When we met Joshua in China, we talked with him (through a translator) about his back. We told him that he would have surgery that would make him straight and tall. I still remember his big smile. So this day had been long planned and anticipated.

We have had multiple meetings with the surgeon, so many x-rays, an MRI and CT, but finally the day had come for Joshua's BIG surgery.

We went to Denver on July 11th in the evening. My sister came and stayed with the other kids. Josh cried as we pulled away from the house and it was all I could do not to join him! We assured him that we would soon be home again and that all the other kids would be there waiting for him. Andy told him that this would be hard, but not as hard as some things that he has already been through. "You were all alone when you had to live at the orphanage, but now you have a Mom and Dad and we are going to stay with you all the time! We are all going to come back home together!" Makes me cry now just to remember Andy saying that to him as he put him in the car. He quickly calmed down and we tried to chat about the scenery and whatever else we could think of to keep the mood light.

We spent the night at the Ronald McDonald House, a wonderful place.  We arrived at the hospital bright and early on the morning of the 12th.  We were the first ones there. Joshua went into surgery about 8:00 and then began the longest day of our lives. My parents brought Kimberly and my niece, Sophia up to visit for awhile. Our pastor and assistant pastor also came and sat with us for a little while. I knew that people all around the world were praying for our boy. What a comfort that was. The nurse came out every two hours and assured us that things were going well, just slowly. Very slowly. She was awesome and we discovered that she was a nursing school classmate with my niece, Gentry. She always asked us how we were doing and encouraged us to eat and drink. She was such a comfort to us.

Dinner time came and went. All of the other families who were waiting were moved either to the patient rooms or sent home. The cleaning staff came and went. It was just us and security guards who  would walk by from time to time. Finally, at about 11:00 p.m. the doctor came out. He looked like he had been working out! He was sweaty and looked so very tired. But he was elated. He said that Joshua's spine was quite rigid and gave them quite a challenge. He was able to correct his spine from a 138 degrees to just 38. Truly incredible. There was someone monitoring his neurological responses throughout the entire surgery (we were able to meet her later and thank her). At that point, it was clear that his little body had handled all that it could, so they wrapped things up.

Josh went straight to the ICU where the sight of the blood and all of the hustle and bustle around him on top of the exhaustion was almost more than I could bear. I left fairly quickly to sleep at the Ronald McDonald house while Andy bravely stayed through the sleepless night. People were there constantly monitoring our precious boy. He looked pretty rough with his breathing tube still in, and tubes and wires everywhere.

poor baby! Hardly looks like himself under all of that.
In all, we spent eleven days in the hospital. (I think it was six nights in the PICU and five on the pediatric floor...honestly it's a little fuzzy now.) Many people who had been part of the surgery stopped by to say hello. He had made quite an impression on them all. Each day he made progress until he was disconnected from everything and sent home. He was still pretty fragile and made me nervous, but we were so glad to get home.

working with the physical therapist to sit on the edge of the bed. Oh the pain!
Standing up! With Dr. Bess and Audra Braun, his P.A.
This is John, a surgical nurse who refused to leave when his shift was over. He insisted on staying in the OR until Josh was all done. He visited with Joshua twice more while he was there and gave him a hat to match his (except with lizard on it!). 

We have been home two and a half weeks now and he is doing so well. He tires easily, but he is getting stronger each day. He looks amazing.

It is hard for him to remember to stand straight. It is as if his body has been crooked for so long, that it still wants to go that way, even though his spine is straight. He tends to cock his head to the side as well which is how it was before. We keep reminding him, "you're straight and tall now!" And then he will straighten up. He has been very brave and kept up a cheerful attitude most of the time. I think the recovery is wearing on him now as he would like to be able to do more.

Thank you so much to all who prayed for us, cared for our kids, brought us meals and encouraged us in so many ways. I especially remember one night when he was really uncomfortable in the hospital and I sent out a quick "please pray" message on Facebook. Immediately, many people responded that they were praying for him. I was so encouraged.

This little boy has a story to tell and we look forward to seeing all of the ways the Lord will use him. We were so impressed with all of the staff at Presbyterian St. Luke's and especially Dr. Bess and his staff. Glory to God for his great mercy and grace in our lives!

definitely making progress here. Look how comfy he looks just sitting there.

Here are before and after x rays from the front. See the tiny space that was left for his lung before the surgery? No wonder he got winded so easily. There was great concern that he would get pneumonia afterwards, but the respiratory therapists and doctors worked so hard with him and we avoided it. 

And from the side. 

Home at last. Is that how the walker is supposed to be used?

Noodles at home. Yes!

When You Walk Through the Fire...

The smoke as it rose over our house in the hours before we evacuated. shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior. Isaiah 43:2

Even though a month has gone by since the events of that day, I am still processing through some of the feelings and experiences of it all. Underneath the fear and sorrow, I am struck again by how faithful God was to us. His presence gave us peace. He graciously provided for our every need. And He continues to use the whole experience to remind us what really matters and how carefully He holds our lives in His hands.

We first saw the Waldo Canon Fire when the kids and I were out shopping on Saturday. By late afternoon, some mandatory evacuation orders had been made. Andy's parent's home is in the upper portion of Mountain Shadows. It was not yet under mandatory evacuation, but the streets nearby were. Since his mom had recently had surgery and was still on oxygen, we felt like it would be best to get them packed up and moved while there was plenty of time. We ended up going with them to my parent's house where we spent the night.

On Sunday things seemed about the same, and they chose to go home. We also returned to our home which is a just a couple of miles east of theirs (and thus farther from the fire.) We spent a couple of nervous days watching the news and talking with them about what they should do.

Tuesday morning Andy went to work and I ran an errand (leaving some of my kids home!) When I got home, I spoke with Andy's parents and expressed my concern that things looked worse. Just after four o'clock the fire came over the ridge near their house. The evacuation order became urgent for them and mandatory for us. I didn't have time to get up there to help them and busied myself getting our essentials together and getting the kids out the door. I was frantic. I was praying aloud and trying to think clearly. I went up in our study which is the highest room in our house and glanced out the window. I could clearly see the fire racing down the foothills towards my mother and father in law's neighborhood.  We got in the car and drove to my parent's house. Sometime along the way we spoke with Andy and he was able to reach his parents. They had gotten into their car and headed down the hill with fire literally on their heels. They headed north to the home of some friends. When Andy arrived at my parent's house, we decided the air quality there was poor enough that we should go further out. We ended up at my sister's house in Peyton. It was just a blessing to be there. It was far enough away that it gave all of us a feeling of safety and we couldn't have had a more comfortable place to stay. My niece and her family were also there, so it was a houseful. They were so gracious and we felt the peace of the Lord as our extended family ministered to us.

We assumed Andy's parent's  house was gone and wondered about ours through the night. But on Wednesday morning we got word that both their house and ours were spared. They were not able to return for several weeks, and what a sight awaited them! Many of their neighbors lost their homes. The beautiful ravine across the street from their home is completely black. Yet their house didn't even smell smoky. God was so gracious to them and we are so thankful. His mom continues to struggle with her health, so we are so glad they didn't have to add the stress of rebuilding. Our house was fine as well. Just a fine layer of soot on everything.

God really protected the kid's hearts through it all. I was amazed at how well they all handled it. I realized that Joshua was most concerned that we would have enough to eat. I went to the store and stocked us up on some of his favorites and that really helped him to feel safe. Isaac and Moriah seemed comforted to know that we were all together and that we would take care of them whether we were at home or somewhere else. Each of them had a lot of trauma in their early lives, so I was amazed at how calm they remained. God was so gracious. It helped that my sister's house is out in the country and there are lots of fun things to do and places to explore. The older kids talked a lot about what they would miss if we lost everything, but continued to rest in the Lord's sovereignty and to be thankful that we were all together. They were a real example to me!

It is hard to see our familiar places so changed. The blackened mountain is never far from view and reminds us daily of all that happened. It reminds us of our dependency on God for our safety and our very breath. Cleanup and rebuilding have already begun up there. Our prayers continue for those who lost so much.

We were so thankful to get back into our house and get re-settled because we knew in just two weeks we would face yet another big event for our family.

Tuesday, August 7, 2012

Tonsils, and BAHA and tethered cord, oh my!

What an incredible summer this has been. We are finally beginning to come up for air, catch up on sleep and resume some of our normal activities (including blogging!)

We began with Isaac's tonsillectomy in May. He did fine. Surprisingly they didn't find large adenoids, or really any adenoids at all. He is a unique boy in so many ways! He also had MRI's from the top of his head to the bottom of his spine under anesthesia. The neurosurgeon was checking his tethered cord repair and just checking for other possible causes for his muscle weakness. She felt that everything looked fine and sent us on to the neurologist. We saw her, but are waiting for some blood work which may give us some more clues. Thursday, Isaac will have the honor of having the last planned surgery for our family for the foreseeable future. It will be an outpatient procedure of a *ahem* private nature. But should correct some things that need a bit of work. (Poor guy.)

Next was Moriah's BAHA implant. We hope that she will get to have the processor by Christmas so she can experience bi-lateral hearing. She was a super star and hardly shed a tear through the whole ordeal.  Now she can defend herself if her brothers are picking on her by pushing her titanium "button" into their arm. It's a little unnerving to see such a thing poking out from behind her ear, but it will be well worth it in the end!
Getting ready!
Moriah had to wear this bonnet for several days with a dressing over her new "button." We thought she sported it well!

On June 12th, Josh had a tethered cord release surgery. He had to lay flat on his back for twenty four hours and then he was allowed to move around. He spent two nights in the hospital. His biggest complaint was that they didn't feed him enough. Jello just didn't do it for him! It was a good experience, for which I was very thankful. We knew we would be back in the same hospital with many of the same nurses for a much bigger surgery in just a month.
Josh and his faithful friend. This was the day we went home.

Through each of these experiences, we have known God's grace and care. Sometimes it has been through Scripture and the comfort of the Holy Spirit. And sometimes through the practical help and encouragement of his people. We couldn't have done it without our parents and church family! They  cared for our other kids and provided meals and most of all prayed unceasingly for us.

Just when we thought things were going to settle down for a little while...something big happened. More on that in my next post.