Often I want to post, but by the time I get the boys in bed I am too tired. I am determined tonight.
It has been an up and down couple weeks at the Walkers. Isaac and I were sick, then Nathan and Shawn. Nathan threw up a lot while he was sick because of the mucus. Then Isaac got croup.
We have decreased Nathan's night time feeds in preparation for the feeding clinic. We are working on different things to help strengthen his chewing muscles. He probably won't eat until they decrease the pediasure. Everything else with Nathan is pretty good. We have many creams to constantly maintain his eczema. I have started doing his weekly IVIG treatments. It still makes me nauseous, but I am doing it. I am so blessed by my boys. Nathan is so mobile. They are both so smart. They are full of action from the moment they wake up.
Our journey is still not over, and God continues to work in me. This journey is not about Nathan, me, our family, or his illness. It is about God. It is about who He is, and who He continues to reveal Himself to be. It is about what Christ did for us. It is about who we are, because of what He did.
God is using Nathan to reach so many people. Even when I have failed at delivering the message, God has still been faithful. God continues to answer prayers.
I promise over the next months, I will post the scriptures that God laid on my heart, that were posted in Nathan's hospital room. It was a hard lesson to learn that the joy of the Lord is a gift. It is always there but we must accept it. What does it truly mean to be joyful, which doesn't mean that I am always happy. It was a lesson in hope. It was experiencing the hope we have in the Lord. And there is so much more.
I haven't shared much about the emotional toll this has taken on me personally. It affected Shawn differently. I did not feel any feelings for a long time. I realized it when I was in the hospital and had all the physical symptoms of an anxiety attack, but felt nothing. It's your body's way of surviving when it is too much to handle. It is strange to me because I am normally a very emotional, expressive person. I felt (feel) guilty. When someone would do something kind for us, I know I was thankful, but I did not feel the emotion. It has affected my relationships, and my relationship with God. Part of me wants to feel more, the other part of me is glad I don't. I am starting to feel more now. Unfortunately it is harder to feel the positive emotions than the negative ones.
But through this God is teaching me an incredible lesson in obedience. Your feelings can't be trusted. Your feelings should not determine your actions. Often we must do things out of obedience, not because we feel like doing it. It has taught me love is not an emotion, but an act of obedience. Its about selflessly serving even when you don't feel like it. Its not about me, or how I feel. I have failed at this so many times, but I am trying. It is a daily struggle.
". . .what does the LORD your God ask of you but to fear the LORD your God, to walk in obedience to him, to love him, to serve the LORD your God with all your heart and with all your soul."
Deuteronomy 10:12
"And this is love: that we walk in obedience to his commands. As you have heard from the beginning, his command is that you walk in love.:"
2 John 1:6
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Monday, October 8, 2012
Monday, October 1, 2012
I am Thankful, I am Content
I am definitely tired today, so I will keep this short. Nathan has his first cold. He spiked a fever last weekend, but he wasn't admitted. All the drainage has been making him through up a lot. He has showed a little more interest in drinking. He has an appointment with OT at Children's Mercy tomorrow. Please pray for Nathan to start eating. Right now he really doesn't eat anything, but is sustained by his g-tube. He drinks anywhere from 5-10 ounces a day still.
If you could also pray for Isaac. It is so hard to know what is a typical four year old, and what is because of our journey. We need wisdom in how to discipline and encourage positive behaviors. He is struggling with anger. Please pray with us against the enemy's attacks on Isaac. We are praying for Isaac to be filled with the joy of the Lord.
Pray for Shawn and I to love each other in a Godly selfless way. Pray for us to be a united team.
I have been keeping a journal (posts on Facebook), and trying to write something every day that I am thankful for. God has blessed us richly. I am so thankful for my family and friends. I do not want to get caught up in the world, and the race for stuff that does not satisfy us. I want to be completely satisfied with the Lord. Thank you Lord for your promises, and for all the blessings you have given me. Thank you for my wonderful family, and my husband.
The fear of the LORD leads to life; then one rests content, untouched by trouble.
Proverbs 19:23
If you could also pray for Isaac. It is so hard to know what is a typical four year old, and what is because of our journey. We need wisdom in how to discipline and encourage positive behaviors. He is struggling with anger. Please pray with us against the enemy's attacks on Isaac. We are praying for Isaac to be filled with the joy of the Lord.
Pray for Shawn and I to love each other in a Godly selfless way. Pray for us to be a united team.
I have been keeping a journal (posts on Facebook), and trying to write something every day that I am thankful for. God has blessed us richly. I am so thankful for my family and friends. I do not want to get caught up in the world, and the race for stuff that does not satisfy us. I want to be completely satisfied with the Lord. Thank you Lord for your promises, and for all the blessings you have given me. Thank you for my wonderful family, and my husband.
The fear of the LORD leads to life; then one rests content, untouched by trouble.
Proverbs 19:23
Sunday, September 23, 2012
Bathtime!!!!
Nathan had his line removed about a month ago. Below are pictures of his first real bath. He loves it so much. I love watching the joy on his face from such a simple thing. These are the little things that so many take for granted. . . what a huge milestone for us. Now we don't have to flush his lines any more either, which is really nice. Before we had to inject heparine and saline into his lines twice a day. Not to mention the line was the reason he got 7 infections in his blood stream.
He has really sensitive skin and has eczema. It actually was so bad that it made a large part of his hair fall out. Hopefully, it will all grow back though.
Nathan started walking about a week ago. Isaac likes to try to "help" him walk. Sometimes it is rally more of Isaac standing him up and throwing him forward. None the less, it is cute. Our boys are growing up. We are so thankful for these milestones! We're still rejoicing!!!
Nathan's First Bath:
Brotherly Love. . . .
Nathan Walking!!!!
He has really sensitive skin and has eczema. It actually was so bad that it made a large part of his hair fall out. Hopefully, it will all grow back though.
Nathan started walking about a week ago. Isaac likes to try to "help" him walk. Sometimes it is rally more of Isaac standing him up and throwing him forward. None the less, it is cute. Our boys are growing up. We are so thankful for these milestones! We're still rejoicing!!!
Nathan's First Bath:
Brotherly Love. . . .
Nathan Walking!!!!
Walkers down for the count
We are all sick today. Nathan threw up three times yesterday and barely kept anything down. He was so restless all last night. Up until three in the morning he did not slepp more than 15 to 30 minutes consecutively. He was started to get congested. Then at about 2am he woke up screaming. I felt so helpless and scared. I couldn't tell what was wrong. With Isaac, I wouldn't have been as worried, I would have been certain it was a cold. But with Nathan, nothing is normal. I called the nurse twice.
I have an infection in my tooth and the pain has almost been intolerable all weekend long. That doesn't make for a happy momma. My pain medication completely knocks me out, and it doesn't even take the pain away.
Today, we were not feeling very well. Luckily that made Isaac very snuggly :) We all laid around today. I was just thankful to be all together at home. I love all 3 of my boys so much. Big thanks to Shawn for doing an awesome job serving all of us today, and taking care of all of us!
Around 4:30 pm, Nathan started spiking a fever. Dad is still at the ER with him. We are waiting to hear if he will get admitted.
Your prayers would be appreciated.
I have an infection in my tooth and the pain has almost been intolerable all weekend long. That doesn't make for a happy momma. My pain medication completely knocks me out, and it doesn't even take the pain away.
Today, we were not feeling very well. Luckily that made Isaac very snuggly :) We all laid around today. I was just thankful to be all together at home. I love all 3 of my boys so much. Big thanks to Shawn for doing an awesome job serving all of us today, and taking care of all of us!
Around 4:30 pm, Nathan started spiking a fever. Dad is still at the ER with him. We are waiting to hear if he will get admitted.
Your prayers would be appreciated.
Thursday, September 20, 2012
Routine . . . to the hosital and back: June & July
Still Catching up June - July 2012
We finally were getting into a routine at home. It was extremely overwhelming. We wouldn't get done with all of Nathan's medical routines until 10:00 or 10:30 at night. I was back to work, and missed my kids so much. We starting to have a bag packed to go to the hospital at all times.
When he would spike a fever we would have to rush to the hospital. It meant he had another infection in his blood. It was very scary. His heart rate would be over 200. He needed fluids and the and the antibiotic as soon as possible. We would hope that it was an infection that could be treated by the antibiotic, and that it wasn't resistant. It takes two days for the cultures to come back with the exact infection type. When the antibiotics started working he would actually get sicker as the bacterias was broken down in his body. We would be in the hospital anywhere from 4 to 14 days with each admission.
God answered another prayer, Shawn and I both still have our jobs. My work had been amazing, and worked with me to that point. Now they wanted me back and I was out of leave. I couldn't stay with Nathan in the hospital anymore. It was scary being faced with the possibility of losing my job. My heart was broken, I was scared. I felt like the worst mother, I felt so guilty being at work. I am the one that has invested so much time in overseeing his care, I knew all of the details, all of the history. Now Shawn had to stay in the hospital with him. I cried out to God, I wanted to do His will. I prayed a lot to see if I should stay home, but I carry our insurance. We did not feel like it was God's will for me to stay home at this time.
It was getting harder and harder for Isaac with each hospital stay. He would ask me when we were going to be a family again. My heart broke for him. This had been emotionally harder for him than even for Nathan. There were so many to attend to Nathan's needs. I felt like Isaac was left out, he didn't understand.
Isaac had also started preschool for the first time. It was tramatic to say the least. I admit I cried the first day. He climbed up me and told me how it made him sad to be there. It got better, but he would cry starting the night before, the morning of . . . and then would be fine right after I left.
We had a nanny, but she had 2 mission trips, so my Mom and Kayla was filling in the five weeks she was gone. I loved having my family with us.
After Nathan got his g tube, he pretty much stopped eating. It was so hard to get on a routine, we were feeding him basically all day. The stress of making sure he got the required calories and hydration was beginning to drive me crazy. I was worried about his kidneys. Everyday we were under so much pressure, I was just exhausted. On the plus side, Nathan had started to finally gain weight.
To be continued. . .
We finally were getting into a routine at home. It was extremely overwhelming. We wouldn't get done with all of Nathan's medical routines until 10:00 or 10:30 at night. I was back to work, and missed my kids so much. We starting to have a bag packed to go to the hospital at all times.
When he would spike a fever we would have to rush to the hospital. It meant he had another infection in his blood. It was very scary. His heart rate would be over 200. He needed fluids and the and the antibiotic as soon as possible. We would hope that it was an infection that could be treated by the antibiotic, and that it wasn't resistant. It takes two days for the cultures to come back with the exact infection type. When the antibiotics started working he would actually get sicker as the bacterias was broken down in his body. We would be in the hospital anywhere from 4 to 14 days with each admission.
God answered another prayer, Shawn and I both still have our jobs. My work had been amazing, and worked with me to that point. Now they wanted me back and I was out of leave. I couldn't stay with Nathan in the hospital anymore. It was scary being faced with the possibility of losing my job. My heart was broken, I was scared. I felt like the worst mother, I felt so guilty being at work. I am the one that has invested so much time in overseeing his care, I knew all of the details, all of the history. Now Shawn had to stay in the hospital with him. I cried out to God, I wanted to do His will. I prayed a lot to see if I should stay home, but I carry our insurance. We did not feel like it was God's will for me to stay home at this time.
It was getting harder and harder for Isaac with each hospital stay. He would ask me when we were going to be a family again. My heart broke for him. This had been emotionally harder for him than even for Nathan. There were so many to attend to Nathan's needs. I felt like Isaac was left out, he didn't understand.
Isaac had also started preschool for the first time. It was tramatic to say the least. I admit I cried the first day. He climbed up me and told me how it made him sad to be there. It got better, but he would cry starting the night before, the morning of . . . and then would be fine right after I left.
We had a nanny, but she had 2 mission trips, so my Mom and Kayla was filling in the five weeks she was gone. I loved having my family with us.
After Nathan got his g tube, he pretty much stopped eating. It was so hard to get on a routine, we were feeding him basically all day. The stress of making sure he got the required calories and hydration was beginning to drive me crazy. I was worried about his kidneys. Everyday we were under so much pressure, I was just exhausted. On the plus side, Nathan had started to finally gain weight.
To be continued. . .
Wednesday, September 19, 2012
Sometimes We Fall
Nathan is walking! In just a couple of days he went from taking a few steps at a time to walking all the time. Now he doesnt want to be held. If I pick him up I am greeted by this ear piercing shrill. I hope it can be amusing for everyone else. I admit is is pretty funny.
Catching up, Going Back Home! May 28, 2012 :
When we left St. Louis at the end of May, Nathan did not have his g tube yet. He basically hadn't gained any weight in over 6 months. His hemoglobin level was chronically low, and they were worried his kidneys were not making a hormone that stimulates our body to make red blood cells called EPO. He was diagnosed with stage 3 kidney failure, meaning his kidneys were working at less than 50%. He would eat on and off, but never more than about 25% of his caloric needs.
I know you are all very excited to know how he is doing now, and I promise I will get to that. To truly appreciate all the prayers God has answered I would like to walk you through our journey.
June 2012
His surgery for the g tube was scheduled for the week after we got back to Kansas City. However, Nathan got sick after being home only a few days with another line infection. We were admitted to our other new home, Childrens Mercy. Here he spent his first birthday. They made it very special. He got a birthday party from the staff and a cake. He even had the music therapist come play the guitar. We stayed in the hospital until the infection was clear and he had three seperate surgical procedures in one day. He got a new Hickman placed (central line), the g tube was placed, and he got a circumcision.
Fast forward to now. With Nathan walking, he falls a lot. He is unsteady on his feet. I am reminded of my walk with the Lord, and how I have stumbled so many times. I am clumsy and often fail. Time and time again, the Lord picks me back up. He does not grow tired and weary, even though I do so many times. He is patient, and helps my steps be steady.
The LORD guides our steps, and we never know where he will lead us.
Proverbs 20:24 ERV
Catching up, Going Back Home! May 28, 2012 :
When we left St. Louis at the end of May, Nathan did not have his g tube yet. He basically hadn't gained any weight in over 6 months. His hemoglobin level was chronically low, and they were worried his kidneys were not making a hormone that stimulates our body to make red blood cells called EPO. He was diagnosed with stage 3 kidney failure, meaning his kidneys were working at less than 50%. He would eat on and off, but never more than about 25% of his caloric needs.
I know you are all very excited to know how he is doing now, and I promise I will get to that. To truly appreciate all the prayers God has answered I would like to walk you through our journey.
June 2012
His surgery for the g tube was scheduled for the week after we got back to Kansas City. However, Nathan got sick after being home only a few days with another line infection. We were admitted to our other new home, Childrens Mercy. Here he spent his first birthday. They made it very special. He got a birthday party from the staff and a cake. He even had the music therapist come play the guitar. We stayed in the hospital until the infection was clear and he had three seperate surgical procedures in one day. He got a new Hickman placed (central line), the g tube was placed, and he got a circumcision.
Fast forward to now. With Nathan walking, he falls a lot. He is unsteady on his feet. I am reminded of my walk with the Lord, and how I have stumbled so many times. I am clumsy and often fail. Time and time again, the Lord picks me back up. He does not grow tired and weary, even though I do so many times. He is patient, and helps my steps be steady.
The LORD guides our steps, and we never know where he will lead us.
Proverbs 20:24 ERV
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