Exciting milestones tonight!!!
I took Isaac to his first swimming lessons, he was such a big boy! He went without Mommy into his class. He's had bad separation anxiety, so this was a big deal.
Tonight Nathan actually had 4 bites of a banana!! YAY Nathan. During Nathan's transplant he got bad mucositis. It's caused from the chemo, it leaves painful open sores down his GI tract. Since then he's not eaten more than 10% of his caloric needs. When the g-tube was put in, he basically stopped eating. He takes about 3 to 5 ounces of water a day by mouth. The little things we take for granted is such a big victory for us.
Nathan does not like things in his mouth. We've had lots of therapy for this. Tonight he let me brush his teeth with a toothbrush for the first time. He even open his mouth for me!
Tomorrow is a big day. We have a follow up test with the ophthalmologist to look at the fluid they found a couple of weeks ago accumulating on the optic nerve of his right eye. Pray for God to completely heal his eye. The doctors believe this could be caused from his medications. They have had us stop his weekly infusions. That was the plus side. We do weekly infusions to supplement his immune system. I HATE needles, but I HATE even more having to stick my son with needles. WE can do ALL things through Christ who strengthens us.
Thank you again for your prayers.
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Tuesday, January 8, 2013
Monday, January 7, 2013
Frusterated?
Its been a frustrating day at work (I work
full time). Let me encourage you, because I needed it today. Be
thankful. In the most frustrating times, when you are angry or when your heart hurt so much, God is there.
We have a nightly routine in our house. My boys like to "family dance". We have a kids worship CD. There is a song, "God is always with us". The lyrics say,
"He is always with us, every up and down. He will never leave us, he’ll always be around. He’s the one, the one we can trust God will always be with us, God will always be with us"
Tonight I am thankful for our family and that we are together. . . The next song was slow. Our family stood in a circle holding hands, swaying back and forth. Next I scooped Isaac up in my arms, and we slow danced. He laid his head on my shoulder as we swayed back and forth (and then a fun dip to get giggles). I am thankful for that moment.
Start counting out everything you have to be thankful for. We having air to breathe, we are able to see, and have places to live and water to drink. God has even blessed us far beyond that.
There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.
Deuteronomy 12:7
May you be blessed by the LORD, the Maker of heaven and earth.
Psalm 115:15
We have a nightly routine in our house. My boys like to "family dance". We have a kids worship CD. There is a song, "God is always with us". The lyrics say,
"He is always with us, every up and down. He will never leave us, he’ll always be around. He’s the one, the one we can trust God will always be with us, God will always be with us"
Tonight I am thankful for our family and that we are together. . . The next song was slow. Our family stood in a circle holding hands, swaying back and forth. Next I scooped Isaac up in my arms, and we slow danced. He laid his head on my shoulder as we swayed back and forth (and then a fun dip to get giggles). I am thankful for that moment.
Start counting out everything you have to be thankful for. We having air to breathe, we are able to see, and have places to live and water to drink. God has even blessed us far beyond that.
There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.
Deuteronomy 12:7
May you be blessed by the LORD, the Maker of heaven and earth.
Psalm 115:15
Tuesday, January 1, 2013
Thanks and Giving
A wonderful praise report. Thank you for your prayers for me and Isaac. Your prayers for are starting to be answered. Thank you for taking time from your busy day to think of us and stand with us in prayer. That is not taken lightly. There is power in prayer, and we are so thankful. There are so many times I was so over whelmed and exhausted I could not even pray. I know it was your prayers that carried us through. God was still working in those times.
Its been an interesting few days. . . The Lord says,
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
First, on Saturday I was blessed with a date night with my boys. I took the boys out to eat and swimming. As we were driving Isaac said, "Mom, look at that fancy hot rod. I've never seen one like that before." Such a grown up statement from a little boy. I had to laugh because it was some car painted with a picture of money to advertise cash for gold. It was one of those moments that I just wanted to squeeze him. He was so cute at dinner. He had his first Shirley Temple. He was so excited about the cherrries and the bottomless fries. I was just so thankful to be with both of them.
Swimming was fun. A little bit of a challenge with one adult, but well worth it. Isaac was much more daring in the water. He was such a good boy, and helpful. I would take Nathan to the top of the slide. Isaac would hold him until I got to the bottom to catch him. Nathan would have a giggle and a huge dimpled grin, and Isaac would laugh as he came down next. I would hold one of Nathan's hands and he would jump from the side of the pool into my arms and squeal. That night he actually let me read him a story and snuggle in bed with him.
On Sunday we went to church as a family. I was contemplated not going because of all the bugs going around, but I really wanted to be consistent in going to church. That is one thing my Mom instilled in me, and I think it is very important. Even on the days that I don't feel like going, I am always glad I did.
Sunday night Isaac woke up asking me to snuggle with him. That is not normal. I got him to bed, and he woke up two more times. I could tell he was getting sick even though he did not have a fever yet. He kept saying his tummy hurt. The third time, I had to go to work so I brought him in bed with us. I told Shawn he was sick. I put the towels down underneath him, and not even a few minutes later, he says I don't want to throw up on the towel. This was mommy code for I am going to throw up. I got off early and by the time I came home, high fever, and more getting sick. But God used this time for me to be with my Isaac. Shawn stayed down stairs with Nathan, and I got to spend the whole day and night with Isaac. God used Isaac being sick as an opportunity for me to love and nurture my little boy. I am so thankful for that time.
Unfortunately this virus is very contagious, and now I am getting sick . . . again. Please pray for quick healing and for protection for Nathan and Shawn.
God has laid on my heart to look for opportunities to give, and to give generously. There are so many with great needs. He will meet our needs when the time comes. He has always been faithful to provide for our needs, and I am so thankful. As we have needs in the future, I am confident the Lord will continue to provide. I am continuing to pray that the Lord will burden our hearts in how to be obedient through giving. I am very excited about a possible opportunity to give with my creative abilities to bless kids with life threatening illnesses. More to come if it works out.
Give generously to them and do so without a grudging heart; then because of this the LORD your God will bless you in all your work and in everything you put your hand to.
Deutoronomy 15:10
I find that our trials are easier to go through when we don't focus on ourselves, but search out the needs of others and are obedient to what the Lord is calling us to do.
Have a blessed New Year!!!
Its been an interesting few days. . . The Lord says,
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
First, on Saturday I was blessed with a date night with my boys. I took the boys out to eat and swimming. As we were driving Isaac said, "Mom, look at that fancy hot rod. I've never seen one like that before." Such a grown up statement from a little boy. I had to laugh because it was some car painted with a picture of money to advertise cash for gold. It was one of those moments that I just wanted to squeeze him. He was so cute at dinner. He had his first Shirley Temple. He was so excited about the cherrries and the bottomless fries. I was just so thankful to be with both of them.
Swimming was fun. A little bit of a challenge with one adult, but well worth it. Isaac was much more daring in the water. He was such a good boy, and helpful. I would take Nathan to the top of the slide. Isaac would hold him until I got to the bottom to catch him. Nathan would have a giggle and a huge dimpled grin, and Isaac would laugh as he came down next. I would hold one of Nathan's hands and he would jump from the side of the pool into my arms and squeal. That night he actually let me read him a story and snuggle in bed with him.
On Sunday we went to church as a family. I was contemplated not going because of all the bugs going around, but I really wanted to be consistent in going to church. That is one thing my Mom instilled in me, and I think it is very important. Even on the days that I don't feel like going, I am always glad I did.
Sunday night Isaac woke up asking me to snuggle with him. That is not normal. I got him to bed, and he woke up two more times. I could tell he was getting sick even though he did not have a fever yet. He kept saying his tummy hurt. The third time, I had to go to work so I brought him in bed with us. I told Shawn he was sick. I put the towels down underneath him, and not even a few minutes later, he says I don't want to throw up on the towel. This was mommy code for I am going to throw up. I got off early and by the time I came home, high fever, and more getting sick. But God used this time for me to be with my Isaac. Shawn stayed down stairs with Nathan, and I got to spend the whole day and night with Isaac. God used Isaac being sick as an opportunity for me to love and nurture my little boy. I am so thankful for that time.
Unfortunately this virus is very contagious, and now I am getting sick . . . again. Please pray for quick healing and for protection for Nathan and Shawn.
God has laid on my heart to look for opportunities to give, and to give generously. There are so many with great needs. He will meet our needs when the time comes. He has always been faithful to provide for our needs, and I am so thankful. As we have needs in the future, I am confident the Lord will continue to provide. I am continuing to pray that the Lord will burden our hearts in how to be obedient through giving. I am very excited about a possible opportunity to give with my creative abilities to bless kids with life threatening illnesses. More to come if it works out.
Give generously to them and do so without a grudging heart; then because of this the LORD your God will bless you in all your work and in everything you put your hand to.
Deutoronomy 15:10
I find that our trials are easier to go through when we don't focus on ourselves, but search out the needs of others and are obedient to what the Lord is calling us to do.
Have a blessed New Year!!!
Friday, December 28, 2012
Forever Changed
Merry Christmas. I hope everyone had a blessed holiday. It has been a busy week. We traveled to St. Louis for Christmas to be with my family. We all enjoyed spending time with them. I miss them so much. My boys love their Grandma and Papa, Aunts, Uncles and cousins. Another thing I love about St. Louis (besides the Cardinals), I got my White Castles.
Nathan is still pretty congested, but at least he isn't throwing up as much. I did not feel well at all over the holiday, but I am starting to feel better. We are finally back home. Nathan has been so cute to watch. He tries to jump, but he can't get off the ground. He sways back and forth whenever he hears music. He actually said "Night Night".
My little Isaac turned four. He is getting so big. He is amazing on the computer. He talks like he is a lot older. He is so smart for his age. I know everyone says that about their kid, but he has had to grow up really fast. He told Grandma yesterday, "Nathan does not eat. He has to be fed with a tube." He will ask me, "Mommy, is it time for Nathan to get another bolus?" A word he should never have to know. My heart grieves for him. He used to be mommy's little boy. When Nathan was diagnosed he was ripped away from me, forever changing our relationship. Overnight, his mommy wasn't there anymore. I wasn't a part of the bedtime routine. I missed reading him books, and going on walks. I missed the new words, new adventures and being a part of his life. The months spent in and out of the hospital did not help. I was away from my precious boy for ten months. He would ask, "Mommy, when are we going to be a family again?"
In the weeks leading up to Nathan being born, I just knew. Shawn and I did so many special things with Isaac. I relished every moment. We took him on nature walks, the swimming pool, feeding the bison. I knew everything was about to change. I would have no idea how much. I knew it would hurt, but I don't think anything can prepare you for it to hurt this bad.
I am home now, but it is not the same. When Nathan got home, Shawn wasn't as comfortable with Nathan's routine. It was a lot of work, and it was defaulted to me. So even though I was there, Isaac's needs would be put on hold.
The little boy that could not leave his mother's side, my son that would cry if I left the room, doesn't want me in the room. He is mean to me. He tells me to go away, he says he doesn't love me. Oh, how my heart breaks. All he wants is his Daddy, he cries if he has to be with me. I know part of it is him growing up, but it's not all of it. Another reminder of how Nathan's illness forever changed our lives. Nathan may be getting better, but things will never be the way they were.
I am supposed to act like everything is okay. The whole world goes on, but no one knows the struggles. They say how good Nathan looks, but there is a constant fear that something else will happen. The chemo can have delayed effects, and each new symptom scares us to death. The effects this journey has had on Isaac, on me, on Shawn, and our marriage are real. They are still there. We are doing our best to heal, but I'd be lying if I said it was easy, or that it didn't hurt.
Please pray with me for my relationship with Isaac. Pray for God to give me the wisdom on when to give him choices and when to be firm. Pray for me to know how to love my son, and for him to love me back. Pray for my broken heart.
The Lord knows my heart and I must not run from Him, but to Him. . . . Lord, I know my hope comes from you. You know my heart is hurting. God give me wisdom. Father, I need your peace. I can not do this on my own. I could not have gotten this far without you. You have the power to make all things new, life comes from you. The world was created by your spoken word. Lord I humbly ask you to heal me grieve, help me heal, show me what I should do to be a Godly mother, and wife. It is in You that I have hope. You are my rock and I will not be shaken . . . .
Come to me, all you who are weary and burdened, and I will give you rest.
Matthew 11:28
Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12
Nathan is still pretty congested, but at least he isn't throwing up as much. I did not feel well at all over the holiday, but I am starting to feel better. We are finally back home. Nathan has been so cute to watch. He tries to jump, but he can't get off the ground. He sways back and forth whenever he hears music. He actually said "Night Night".
My little Isaac turned four. He is getting so big. He is amazing on the computer. He talks like he is a lot older. He is so smart for his age. I know everyone says that about their kid, but he has had to grow up really fast. He told Grandma yesterday, "Nathan does not eat. He has to be fed with a tube." He will ask me, "Mommy, is it time for Nathan to get another bolus?" A word he should never have to know. My heart grieves for him. He used to be mommy's little boy. When Nathan was diagnosed he was ripped away from me, forever changing our relationship. Overnight, his mommy wasn't there anymore. I wasn't a part of the bedtime routine. I missed reading him books, and going on walks. I missed the new words, new adventures and being a part of his life. The months spent in and out of the hospital did not help. I was away from my precious boy for ten months. He would ask, "Mommy, when are we going to be a family again?"
In the weeks leading up to Nathan being born, I just knew. Shawn and I did so many special things with Isaac. I relished every moment. We took him on nature walks, the swimming pool, feeding the bison. I knew everything was about to change. I would have no idea how much. I knew it would hurt, but I don't think anything can prepare you for it to hurt this bad.
I am home now, but it is not the same. When Nathan got home, Shawn wasn't as comfortable with Nathan's routine. It was a lot of work, and it was defaulted to me. So even though I was there, Isaac's needs would be put on hold.
The little boy that could not leave his mother's side, my son that would cry if I left the room, doesn't want me in the room. He is mean to me. He tells me to go away, he says he doesn't love me. Oh, how my heart breaks. All he wants is his Daddy, he cries if he has to be with me. I know part of it is him growing up, but it's not all of it. Another reminder of how Nathan's illness forever changed our lives. Nathan may be getting better, but things will never be the way they were.
I am supposed to act like everything is okay. The whole world goes on, but no one knows the struggles. They say how good Nathan looks, but there is a constant fear that something else will happen. The chemo can have delayed effects, and each new symptom scares us to death. The effects this journey has had on Isaac, on me, on Shawn, and our marriage are real. They are still there. We are doing our best to heal, but I'd be lying if I said it was easy, or that it didn't hurt.
Please pray with me for my relationship with Isaac. Pray for God to give me the wisdom on when to give him choices and when to be firm. Pray for me to know how to love my son, and for him to love me back. Pray for my broken heart.
The Lord knows my heart and I must not run from Him, but to Him. . . . Lord, I know my hope comes from you. You know my heart is hurting. God give me wisdom. Father, I need your peace. I can not do this on my own. I could not have gotten this far without you. You have the power to make all things new, life comes from you. The world was created by your spoken word. Lord I humbly ask you to heal me grieve, help me heal, show me what I should do to be a Godly mother, and wife. It is in You that I have hope. You are my rock and I will not be shaken . . . .
Come to me, all you who are weary and burdened, and I will give you rest.
Matthew 11:28
Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12
Thursday, December 20, 2012
Do Not Be Anxious
It has been a challenging week. I really don't want to go into specifics other than there are a couple potentially significant challenges we are facing. I am trying to trust the Lord and not be anxious. I know the Lord will provide. So just pray that the Lord will provide just as He has throughout the entire journey. Even if it does not seem possible with our own resources, nothing is impossible with God. This is one of my favorite scriptures that I have posted in my house. Anxiety is something I often struggle with and this helps to guard my heart.
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:5-7
Nathan and I are still sick, which is why I haven't posted yet this week.
My little brave boy Isaac turns four tomorrow. I am thankful for the richness he adds to our lives. I love his giggles and energy. He loves our nightly family dances to a Veggie Tales worship CD. He loves to jump. He loves glow sticks, reading books, slushees, and pigs in a blanket (pancakes with sausage) for breakfast. I love that he still likes to snuggle.
Update on Nathan:
Tests show that although his liver function improved slightly, they are still high. We are holding his infusions for now. They ran some additional tests to see if he may have a virus since he has gotten sick several times.
Yesterday at the ophthalmology appointment were all surprised to find out Nathan has fluid accumulating at the optic nerve as it enters his right eye. Right now in the doctors terms, "it brings more questions than answers". It potentially could be medicine related. The Bone Marrow doctors are going to have further discussions with the ophthalmologist, and they are doing a thorough review of records to see if anything may have potentially caused this. Right now his vision is fine, we don't know what the implications are at this point.
We just need to keep praying!
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:5-7
Nathan and I are still sick, which is why I haven't posted yet this week.
My little brave boy Isaac turns four tomorrow. I am thankful for the richness he adds to our lives. I love his giggles and energy. He loves our nightly family dances to a Veggie Tales worship CD. He loves to jump. He loves glow sticks, reading books, slushees, and pigs in a blanket (pancakes with sausage) for breakfast. I love that he still likes to snuggle.
Update on Nathan:
Tests show that although his liver function improved slightly, they are still high. We are holding his infusions for now. They ran some additional tests to see if he may have a virus since he has gotten sick several times.
Yesterday at the ophthalmology appointment were all surprised to find out Nathan has fluid accumulating at the optic nerve as it enters his right eye. Right now in the doctors terms, "it brings more questions than answers". It potentially could be medicine related. The Bone Marrow doctors are going to have further discussions with the ophthalmologist, and they are doing a thorough review of records to see if anything may have potentially caused this. Right now his vision is fine, we don't know what the implications are at this point.
We just need to keep praying!
Thursday, December 13, 2012
Plan Delay
Our family needs more prayers, especially Nathan and Isaac.
Yesterday was a lot longer, and harder at the hospital than I had hoped for. The feeding clinic appointment went good, we made a plan to ween him off the feeding tube. In the bone marrow clinic they had to do a baseline blood test, the blood draw was nothing short of traumatic. We did not have our regular nurse. The first nurse fished, and kept trying to reposition the needle while Nathan screamed. Two other nurses were holding him down. He looked up up me with the most heart wrenching look. I could not take away his pain. The second nurse stuck him twice, still no blood. They finally called a special vascular team, and it took a while for them to get there.
The hospital called with results. His liver and kidney levels which had been elevated, more than quadrupled from last week. High is not good, it means his kidney is not filtering like it should. We are hoping it is due to a cold / virus he has, he has not been feeling well. The mucas makes him throw up a lot with his feeds, which could have also caused him to be dehydrated. Bottom line, his kidney and liver function is too compromised for him to be weened right now. The plan is put on hold. I am disappointed and nervous and worried. Please pray for Nathan.
Yesterday was a lot longer, and harder at the hospital than I had hoped for. The feeding clinic appointment went good, we made a plan to ween him off the feeding tube. In the bone marrow clinic they had to do a baseline blood test, the blood draw was nothing short of traumatic. We did not have our regular nurse. The first nurse fished, and kept trying to reposition the needle while Nathan screamed. Two other nurses were holding him down. He looked up up me with the most heart wrenching look. I could not take away his pain. The second nurse stuck him twice, still no blood. They finally called a special vascular team, and it took a while for them to get there.
The hospital called with results. His liver and kidney levels which had been elevated, more than quadrupled from last week. High is not good, it means his kidney is not filtering like it should. We are hoping it is due to a cold / virus he has, he has not been feeling well. The mucas makes him throw up a lot with his feeds, which could have also caused him to be dehydrated. Bottom line, his kidney and liver function is too compromised for him to be weened right now. The plan is put on hold. I am disappointed and nervous and worried. Please pray for Nathan.
As for Isaac, it is a continual balance to meet both of their needs. There are times Isaac's needs have to be put on hold for Nathan. He seems to freak out when Nathan throws up. It shows itself as acting out, but I think he's worried. Plus we are intently focused on Nathan which doesn't help. On the plus side we got to take Isaac to a special waterpark to celebrate an early birthday. The doctors cleared Nathan to go into a public pool for the first time. It was fun. There are blessings among the trails. We were thankful for the time to celebrate as a family. I will post more pictures soon.
Thank you for all of your prayers. We are praying God will bless all of your families this Christmas season.
Tuesday, December 4, 2012
Hey, Hey It's A Monkey
Just a cute note. So I turn my back for a split second in the kitchen, and I turn around Nathan climbed on top of the chair and was getting on top of the table! I didn't even know he could do that. He is fast!!! He's always been my little monkey.
We had a great night as a family. Nathan loves music and teeters back and forth to dance. We had a family dance time to a Veggie Tales Worship CD. We were all spinning and jumping together. What a sweet moment.
Thank you everyone for your prayers.
We had a great night as a family. Nathan loves music and teeters back and forth to dance. We had a family dance time to a Veggie Tales Worship CD. We were all spinning and jumping together. What a sweet moment.
Thank you everyone for your prayers.
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