Today was a great day, but I am very tired. We are all doing well. There is no change with Nathan. We have two appointments at Childrens Mercy tomorrow. Our doctor, whom we love, is leaving. I am so sad! We have an appointment with the feeding clinic. There has not been much change with eating. Yea, he still doesn't eat. Sigh. . . . someday . . . .
We had a memorial for sweet Joella today. At 2, little joella went to be with Jesus. God blessed us with a beautiful day to honor her memory. I pray that God will continue to provide her parents with everything they need on this journey. Throughout Nathan's journey she has been on our minds and in our hearts. Now when we go to Childrens Mercy for inpatient stays we are on the sam efloor she was on. Ella Bella we love and miss you.
On a differnt note if anyone would like to send letter to Nathan or Isaac, they enjoy getting mail. It would be a huge blessing.
Please send cards and letters to:
Isaac and Nathan Walker
1618 SE Boone Trail
Lee's Summit, MO 64063
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Sunday, November 4, 2012
Friday, November 2, 2012
Rough Road . . . Lesson Learned
It has been a challenging couple of days.
Halloween was a good lesson for me of trying to let go of expectations. Anyone who knows me can testify that I like to make things special. So I wanted to make worm jello, mummy hot dogs, and a special drink. Long story short. . . Things ended up being very stressful despite my efforts to space things out. I literally was asking God, what are you trying to teach me, why is this so hard? Lesson learned! I need to not set such high expectations. I get this vision in my head and I want it to look a certain way. I need to be flexible if things don't go the way I had planned. It turned out okay, but the night had a rough start. We took the boys out trick or treating, and it ended up being fun. Isaac didn't even want to wear his angry birds. We had a Buzz Lightyear again, and a skeleton. It was overall a good night.
Last night was especially rough. It was time for Nathan's infusion. It was awful. He was in a lot of pain. I had to hold him down while he screamed. The medicine burns a lot going in. . . Normally the numbing cream lets him sleep while we do it. Lets just say things did not go as planned, it was our mistake. The cream was not on long enough. Hindsight, we should have stopped at reapplied the cream. I was afraid of contaminating the needles because I don't have any extras. I should have stopped. He got so upset he threw up everywhere. I was heartbroken, I cried with him. I hated going into work today and leaving him. Plus I only got about 4-1/2 hours of sleep. TIRED MAMA.
We went to the store tonight. While we were sitting down eating, Shawn was feeding Nathan her bolus. A couple came over and started asking us about what was wrong with Nathan. We started talking and they were an awesome Christian couple. She is a nurse and he is a chaplain. They prayed for Nathan and told us how he would bring people to Christ and be a testimony to God. AMEN! God used them to encourage us in a mighty way tongiht. I am thankful they were bold to come up and talk to us.
This tired mommy will share pictures and thoughts later. . . right now, its off to bed.
So Thankful!
Halloween was a good lesson for me of trying to let go of expectations. Anyone who knows me can testify that I like to make things special. So I wanted to make worm jello, mummy hot dogs, and a special drink. Long story short. . . Things ended up being very stressful despite my efforts to space things out. I literally was asking God, what are you trying to teach me, why is this so hard? Lesson learned! I need to not set such high expectations. I get this vision in my head and I want it to look a certain way. I need to be flexible if things don't go the way I had planned. It turned out okay, but the night had a rough start. We took the boys out trick or treating, and it ended up being fun. Isaac didn't even want to wear his angry birds. We had a Buzz Lightyear again, and a skeleton. It was overall a good night.
Last night was especially rough. It was time for Nathan's infusion. It was awful. He was in a lot of pain. I had to hold him down while he screamed. The medicine burns a lot going in. . . Normally the numbing cream lets him sleep while we do it. Lets just say things did not go as planned, it was our mistake. The cream was not on long enough. Hindsight, we should have stopped at reapplied the cream. I was afraid of contaminating the needles because I don't have any extras. I should have stopped. He got so upset he threw up everywhere. I was heartbroken, I cried with him. I hated going into work today and leaving him. Plus I only got about 4-1/2 hours of sleep. TIRED MAMA.
We went to the store tonight. While we were sitting down eating, Shawn was feeding Nathan her bolus. A couple came over and started asking us about what was wrong with Nathan. We started talking and they were an awesome Christian couple. She is a nurse and he is a chaplain. They prayed for Nathan and told us how he would bring people to Christ and be a testimony to God. AMEN! God used them to encourage us in a mighty way tongiht. I am thankful they were bold to come up and talk to us.
This tired mommy will share pictures and thoughts later. . . right now, its off to bed.
So Thankful!
Sunday, October 28, 2012
Bites and a spoon!!!!
I have sat down several times to write, and I did not have the words. I was having a rough week last week. I sat here and wondered why I was even writing, if anyone even cared. You know self pity and all that stuff that comes with the lows. Our schedule is so hectic, our lives still so much isolated, that it takes a toll. I had not been feeling well, and it felt like one blow after another.
God has been good to encourage me. I have tried hard to focus on the needs of others. I have been working on being quick to forgive, and extending grace. I am thankful for two very dear friends taking time to talk with me.
We have a huge praise. It may seem small, but it is big for us. Yesterday we went out to eat (that's not the praise). We went to a self serve frozen yogurt place for dessert. Nathan was having a blast just running all over. He came up to Shawn and started yelling and "asking" for a bite. HE ATE OFF SHAWN'S SPOON. . . then mine, then Isaac's. This is huge!
He is just starting to put a spoon by his mouth. . . sometimes, and only if he is holding it. Nathan will not let us feed him.
Isaac was so excited and cheering for Nathan as he ate bites. It was a doubly cute moment watching Isaac feed Nathan.
Tonight he actually ate 5 goldfish crackers and part of a Ritz cracker!
Thank you for your prayers. Please continue to pray for Nathan to eat.
I will also share some fun fall pictures!!!
God has been good to encourage me. I have tried hard to focus on the needs of others. I have been working on being quick to forgive, and extending grace. I am thankful for two very dear friends taking time to talk with me.
We have a huge praise. It may seem small, but it is big for us. Yesterday we went out to eat (that's not the praise). We went to a self serve frozen yogurt place for dessert. Nathan was having a blast just running all over. He came up to Shawn and started yelling and "asking" for a bite. HE ATE OFF SHAWN'S SPOON. . . then mine, then Isaac's. This is huge!
He is just starting to put a spoon by his mouth. . . sometimes, and only if he is holding it. Nathan will not let us feed him.
Isaac was so excited and cheering for Nathan as he ate bites. It was a doubly cute moment watching Isaac feed Nathan.
Tonight he actually ate 5 goldfish crackers and part of a Ritz cracker!
Thank you for your prayers. Please continue to pray for Nathan to eat.
I will also share some fun fall pictures!!!
Saturday, October 13, 2012
Rich Blessings and Good Gifts
Well Nathan is sick again with a cold. We had about a week of somewhat healthy. It has been a week since Isaac got over croupe, I hope Nathan doesn't get it. When Nathan gets a cold, it means a lot of thowing up. He gags on the mucus and throws up. It also means alot of laundry. Poor little guy.
Today was challenging. This evening Isaac had a melt down. . . . over marshmallows. He was screaming, I could not get him to calm down. I gave him three choices, one of which I was going to put him to bed. Thank God for patience, I was so calm. I just kept praying for wisdom to know what to do. I just kept holding him tightly so he could not kick. After about 30 minutes of screaming / crying, I ended up taking him outside. I was hoping a different environment would calm him down. He ended up getting sidetracked on why he couldnt see the moon on a cloudy night. I love how easy it is to distract kiddos :) Then I got lots of snuggle time, that was nice.
I feel like such a bad Mom sometimes, I have to force myself sometimes to be involved and not check out mentally. Sometimes I m just so numb, its not intentional. But once Im in the swing of things it all comes back. I relish the moments. Its so hard to go to work. It hurts . . But I carry our insurance. I miss my family in St. Louis so much. I try to not dwell on these things. But deep inside it still hurts. Deep inside sometimes I still feel alone, overwhelmed, sometimes angry, guilty.
On a incredibly cool note, we had a company come last night with a huge 16 foot by 16 foot movie screen. Isaac picked Toy Story 2. It was amazing. I had been wanting to do this since we got home. God knows the desires of our hearts, and blesses us over and beyond anything we could ever imagine. Someone donated the movie package to us, down to the popcorn machine I had wanted. God is so good. I was so blessed to share the blessing with others. I made lots of decorations of course. And I have to give LOTS of kuddos to my amazing husband who goes along with my Hair brained ideas, and helps. I could not have done it without the help of our amazinf Nanny Hailey and Shawn. THANKS!!!
I have to also mention, my amazing Cardinals came back (from 0-6) with an unbelievable win (9-7) to go on to compete for the division champs. They always have to make it so tense! I seriously wanted to throw up myself! Love my birds! God blessed me richly yesterday!!!! Thank you Jesus, we are so thankful. You know the desires of our hearts, and he gives us good gifts!
I know that when I come to you, I will come in the full measure of the blessing of Christ.
Romans 15:29
Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ.
Ephesians 1:3
If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!”
Luke 11:13
Today was challenging. This evening Isaac had a melt down. . . . over marshmallows. He was screaming, I could not get him to calm down. I gave him three choices, one of which I was going to put him to bed. Thank God for patience, I was so calm. I just kept praying for wisdom to know what to do. I just kept holding him tightly so he could not kick. After about 30 minutes of screaming / crying, I ended up taking him outside. I was hoping a different environment would calm him down. He ended up getting sidetracked on why he couldnt see the moon on a cloudy night. I love how easy it is to distract kiddos :) Then I got lots of snuggle time, that was nice.
I feel like such a bad Mom sometimes, I have to force myself sometimes to be involved and not check out mentally. Sometimes I m just so numb, its not intentional. But once Im in the swing of things it all comes back. I relish the moments. Its so hard to go to work. It hurts . . But I carry our insurance. I miss my family in St. Louis so much. I try to not dwell on these things. But deep inside it still hurts. Deep inside sometimes I still feel alone, overwhelmed, sometimes angry, guilty.
On a incredibly cool note, we had a company come last night with a huge 16 foot by 16 foot movie screen. Isaac picked Toy Story 2. It was amazing. I had been wanting to do this since we got home. God knows the desires of our hearts, and blesses us over and beyond anything we could ever imagine. Someone donated the movie package to us, down to the popcorn machine I had wanted. God is so good. I was so blessed to share the blessing with others. I made lots of decorations of course. And I have to give LOTS of kuddos to my amazing husband who goes along with my Hair brained ideas, and helps. I could not have done it without the help of our amazinf Nanny Hailey and Shawn. THANKS!!!
I have to also mention, my amazing Cardinals came back (from 0-6) with an unbelievable win (9-7) to go on to compete for the division champs. They always have to make it so tense! I seriously wanted to throw up myself! Love my birds! God blessed me richly yesterday!!!! Thank you Jesus, we are so thankful. You know the desires of our hearts, and he gives us good gifts!
I know that when I come to you, I will come in the full measure of the blessing of Christ.
Romans 15:29
Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ.
Ephesians 1:3
If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!”
Luke 11:13
Monday, October 8, 2012
Obedience
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
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
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
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