Friday, June 25, 2010
Fake Out
You know that 2.5 second feeling you have when you very first wake up in the morning? The feeling that everything is normal and the way it should be? Then, you really wake up and the realization that everything is definately NOT normal smacks you like a brick to the face. It happened the first few mornings after Gary deployed to Iraq. It happened this morning. My baby Luke has spinal cord damage. He needs surgery that may or may not help him. I sit here in tears over the pain, confusion, and frustration he's going to have to endure after this surgery. If I could have this surgery for him... if I could just somehow give him my healthy bones. It wouldn't take a second thought. I'd do it in a heartbeat. Life just isn't fair.
Thursday, June 24, 2010
Luke's MRI
Today was Luke's MRI. The results showed that his spinal cord has indeed been damaged at the c1c2 area. Dr. Rozzelle suggests a c1c2 internal and external stabilization of the c1c2 using a metal plate and rod attaching the base of the skull to the c1c2 and a halo that will hold his neck and head in place for 2-3 months. The metal is the internal stabilization and the halo is the external stabilization. The hope is that the bone around the base of the skull and the c1c2 vertebrae will grow together creating a stable area around his spinal cord preventing further damage. Dr. Rozzelle also says this surgery should be done sooner rather than later due to the current condition of the spinal cord. He also understands that this is a major surgery and Gary and I want to get a second opinion. He even suggested a few drs for us to contact.
Gary and I are going to talk to Luke's geneticist- who understands Luke's bone disorder best, and send the MRI, CT scan, and x-rays to a couple of pediatric neurosurgeons to get their opinions. We just want to be sure this surgery is the best solution for Luke's problem. After getting these dr's opinions, we plan to move forward with surgery to protect Luke's spinal cord.
Dr. Rozzelle has suggested we put Luke in a neck brace until we decide when to do the surgery. Thankfully, Luke likes the neck brace and thinks it's "cool". :0)
Some details of the surgery Dr. Rozzelle suggests: It will be about 4 hours. He will then go to ICU for a day or so. Then he will be in the hospital for a week or so. After that, Luke will get frequent MRI's and CT scans to see if the fusion is working. The halo will be on for 2-3 months and then come off. That's what we know so far. This is barring, of course, any complications.
Also, this surgery may not 'work'. Meaning, the bones may not fuse. If they don't fuse, another surgery will be performed. The chances that a second surgery will work are very low.
Please pray with us that the other opinions will be helpful and point us in the right direction. Also, that if the above mentioned surgery is the one done, that it will 'work' the first time. Gary and I also ask you to pray for our family as we draw closer to one another for support and encouragement. We haven't figured out the best time or way to tell Luke about this. Please pray for that, too. It will be a major ordeal for Luke to have to understand and accept. We are praying for guidance in this.
Again, thank you for your prayers. Thank you for your support and love during this time. We praise God for His provision and for protecting Luke thus far! He is a good and mighty God!
Gary and I are going to talk to Luke's geneticist- who understands Luke's bone disorder best, and send the MRI, CT scan, and x-rays to a couple of pediatric neurosurgeons to get their opinions. We just want to be sure this surgery is the best solution for Luke's problem. After getting these dr's opinions, we plan to move forward with surgery to protect Luke's spinal cord.
Dr. Rozzelle has suggested we put Luke in a neck brace until we decide when to do the surgery. Thankfully, Luke likes the neck brace and thinks it's "cool". :0)
Some details of the surgery Dr. Rozzelle suggests: It will be about 4 hours. He will then go to ICU for a day or so. Then he will be in the hospital for a week or so. After that, Luke will get frequent MRI's and CT scans to see if the fusion is working. The halo will be on for 2-3 months and then come off. That's what we know so far. This is barring, of course, any complications.
Also, this surgery may not 'work'. Meaning, the bones may not fuse. If they don't fuse, another surgery will be performed. The chances that a second surgery will work are very low.
Please pray with us that the other opinions will be helpful and point us in the right direction. Also, that if the above mentioned surgery is the one done, that it will 'work' the first time. Gary and I also ask you to pray for our family as we draw closer to one another for support and encouragement. We haven't figured out the best time or way to tell Luke about this. Please pray for that, too. It will be a major ordeal for Luke to have to understand and accept. We are praying for guidance in this.
Again, thank you for your prayers. Thank you for your support and love during this time. We praise God for His provision and for protecting Luke thus far! He is a good and mighty God!
Wednesday, June 16, 2010
More thoughts...
I wrote a letter to a friend to encourage her yesterday. She's coming up on a stressful week and I wanted to help out in some way. Of course, by writing this letter, it's been making me think a lot on the relationships I have in my life. I have begun to realize that although I'm the one who feels I've been wronged by certain people, I have wronged them, too. I have not been loving or even nice to them. I've been so busy focusing on how they are mean or unloving towards me or my kids, that I've lost sight of God in that relationship.
Here is a part of the letter I wrote to my friend that has been convicting ME!
We, as Christians, are to love God and others at all times, under all circumstances (Matthew 22:37-39 Love the Lord your God with all your heart, with all your soul, and with all your mind… Love your neighbor as yourself). We are called to love those who are hardest to love (Matthew 5:44-48 But I {Jesus} tell you, love your enemies and pray for those who persecute you, so that you may be sons of your Father in heaven. For He causes the sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. For if you love those who love you, what reward will you have? Don’t even the tax collectors do the same? And if you greet only your brothers, what are you doing out of the ordinary? Don’t even the Gentiles do the same? Be perfect, therefore, as your heavenly Father is perfect.).
We have to show kindness, patience, and longsuffering while bearing with them (Matthew 5:13- 16 You are the salt of the earth. But if the salt should lose its taste, how can it be made salty? It’s no longer good for anything but to be thrown out and trampled on by men. You are the light of the world. A city on a hill cannot be hidden. No one lights a lamp and puts it under a basket, but rather on a lamp stand, and it gives light for all who are in the house. In the same way, let your light shine before men, so that they may see your good works and give glory to your Father in heaven.). There are no qualifications for the ungodly. They behave their own way because they are in the darkness. We are to show the Light. They will hate us for it, but (Ephesians 6:12-13) our battle is not against flesh and blood, but against the rulers, against the authorities, against the world powers of this darkness, against the spiritual forces of evil in the heavens. This is why you must take up the full armor of God, so that you may be able to resist in the evil day, and having prepared everything, to take your stand.
Here are some verses I found to focus on and meditate upon when faced with a particularly stressful situation or relationship. I hope they are sources of reassurance and comfort for you, too!
Ephesians 6:18 With every prayer and request, pray at all times in the Spirit, and stay alert in this, with all perseverance and intercession for all the saints.
Philippians 4:6 Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and your minds in Christ Jesus.
James 1:19-20 Be quick to listen, slow to speak, and slow to anger, for the anger of man does not achieve the righteousness of God.
I Thessalonians 5:18 Be thankful for all things for this is the will of God in Christ Jesus concerning you.
Philippians 2:4 Everyone should look out not only for his own interests, but also for the interests of others.
I Corinthians 10:13 No temptation has overtaken you except what is common to humanity. God is faithful and He will not allow you to be tempted beyond what you are able, but with temptation, He will also provide a way of escape, so that you are able to bear it.
Philippians 2:13-15 For it is God who is working in you, enabling you both to will and to act for His good purpose. Do everything without grumbling or arguing, so that you may be blameless and pure, children of God who are faultless in a crooked and perverted generation, among whom you shine like stars in the world
Philippians 4:8 Whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable- if there is any moral excellence and if there is any praise- dwell on these things.
On a lighter note, I am going to a family reunion this weekend and am SO looking forward to it! I can't wait to see a few people in particular, but, on a whole, it will be fun to see everyone. My mom has asked me to be the 'official picture taker'. I think it's because I have an awesome camera ... :0) The bad thing is, I would rather visit and talk than take pictures! LOL! I'll have to designate the chubby hubby the picture taker... he's more the strong silent type, so he won't be tempted to talk instead of take pictures!
Til Next time! Amy
Here is a part of the letter I wrote to my friend that has been convicting ME!
We, as Christians, are to love God and others at all times, under all circumstances (Matthew 22:37-39 Love the Lord your God with all your heart, with all your soul, and with all your mind… Love your neighbor as yourself). We are called to love those who are hardest to love (Matthew 5:44-48 But I {Jesus} tell you, love your enemies and pray for those who persecute you, so that you may be sons of your Father in heaven. For He causes the sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous. For if you love those who love you, what reward will you have? Don’t even the tax collectors do the same? And if you greet only your brothers, what are you doing out of the ordinary? Don’t even the Gentiles do the same? Be perfect, therefore, as your heavenly Father is perfect.).
We have to show kindness, patience, and longsuffering while bearing with them (Matthew 5:13- 16 You are the salt of the earth. But if the salt should lose its taste, how can it be made salty? It’s no longer good for anything but to be thrown out and trampled on by men. You are the light of the world. A city on a hill cannot be hidden. No one lights a lamp and puts it under a basket, but rather on a lamp stand, and it gives light for all who are in the house. In the same way, let your light shine before men, so that they may see your good works and give glory to your Father in heaven.). There are no qualifications for the ungodly. They behave their own way because they are in the darkness. We are to show the Light. They will hate us for it, but (Ephesians 6:12-13) our battle is not against flesh and blood, but against the rulers, against the authorities, against the world powers of this darkness, against the spiritual forces of evil in the heavens. This is why you must take up the full armor of God, so that you may be able to resist in the evil day, and having prepared everything, to take your stand.
Here are some verses I found to focus on and meditate upon when faced with a particularly stressful situation or relationship. I hope they are sources of reassurance and comfort for you, too!
Ephesians 6:18 With every prayer and request, pray at all times in the Spirit, and stay alert in this, with all perseverance and intercession for all the saints.
Philippians 4:6 Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and your minds in Christ Jesus.
James 1:19-20 Be quick to listen, slow to speak, and slow to anger, for the anger of man does not achieve the righteousness of God.
I Thessalonians 5:18 Be thankful for all things for this is the will of God in Christ Jesus concerning you.
Philippians 2:4 Everyone should look out not only for his own interests, but also for the interests of others.
I Corinthians 10:13 No temptation has overtaken you except what is common to humanity. God is faithful and He will not allow you to be tempted beyond what you are able, but with temptation, He will also provide a way of escape, so that you are able to bear it.
Philippians 2:13-15 For it is God who is working in you, enabling you both to will and to act for His good purpose. Do everything without grumbling or arguing, so that you may be blameless and pure, children of God who are faultless in a crooked and perverted generation, among whom you shine like stars in the world
Philippians 4:8 Whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable- if there is any moral excellence and if there is any praise- dwell on these things.
On a lighter note, I am going to a family reunion this weekend and am SO looking forward to it! I can't wait to see a few people in particular, but, on a whole, it will be fun to see everyone. My mom has asked me to be the 'official picture taker'. I think it's because I have an awesome camera ... :0) The bad thing is, I would rather visit and talk than take pictures! LOL! I'll have to designate the chubby hubby the picture taker... he's more the strong silent type, so he won't be tempted to talk instead of take pictures!
Til Next time! Amy
Monday, June 14, 2010
Facing my sin to Focus on God
This past weekend was a respite for Gary and me. Instead of worrying over Luke's neck issues and trying to figure everything out, we each took the time to pray, fellowship, and worship God. Gary's way of letting things settle in his mind was to finish painting the pergolas on the back porch. He did a wonderful job, by the way! When he came into the house that evening, I could tell he was at peace and not struggling with anxiety and worry over Luke. He later told me that he was able to (while mindlessly painting) focus on God, the past struggles He has brought us through, and how he is now assured that whatever the MRI shows, he will trust God with Luke.
I was able to spend a lot of time with a dear Christian friend. We didn't talk about Luke. We didn't focus on what I didn't know or understand. We talked about our struggles and sinfulness. We talked about being imperfect mothers and wives; how we long to do what is right, but lose our tempers, get obsessed with how we are being treated and allow bitterness to take root. It was encouraging to know we share the same struggles and that God has given us the way to know how to deal with them: His Word.
After spending time at church yesterday and doing devotions with Gary, I know I also struggle with loving God when I've been hurt. My first inclination is to lash out and hurt whoever hurt me. I hold back forgiveness thinking I can't let someone get away with hurting me. This is not the gospel. This is not what being a Christian is. God expects me to behave and act like Christ, His Son. His Son who, while I was still a sinner and hated Him, loved me and died a humiliating death in my place. He paid the price for my unwillingness to forgive others and love God.
What a wonderful God I serve. What a blessing to know He loves me even when I hurt him and He refuses to hold back forgiveness. He gives me His forgiveness so willingly and I will never, ever deserve it.
The hymn we sang during family worship last night was Amazing Love. Here are the words, so beautiful, so sweet, so true:
And can it be that I should gain an interest in the Saviour's blood? Died he for me, who cause his pain? For me, who him to death pursued? Amazing Love, how can it be, that thou my God shouldst die for me?
Amazing Love! How can it be that thou my God shouldst die for me?
'Tis mystery all! The Immortal dies; who can explore his strange design? In vain the firstborn seraph tries to sound the depths of love divine. 'Tis mercy all! Let earth adore, let angel minds inquire no more.
Amazing Love! How can it be that thou my God shouldst die for me?
He left his Father's throne above (so free, so infinite His grace!) humbled Himself (so great his love!) and bled for all his chosen race. 'Tis mercy all, immense and free; for O my God, it found out me.
Amazing Love! How can it be that thou my God shouldst die for me?
Long my imprisoned spirit lay fast bound in sin and nature's night; thine eye diffused a quickening ray; I woke, the dungeon flamed with light; my chains fell off, my heart was free; I rose, went forth, and followed Thee.
Amazing Love! how can it be that thou my God shouldst die for me?
No condemnation now I dread; Jesus, and all in him, is mine! Alive in him, my living Head, and clothed in righteousness divine, bold I approach the eternal throne, and claim the crown, through Christ my own.
Amazing Love! How can it be that thou my God shouldst die for me?
(written by Charles Wesley, 1738)
I was able to spend a lot of time with a dear Christian friend. We didn't talk about Luke. We didn't focus on what I didn't know or understand. We talked about our struggles and sinfulness. We talked about being imperfect mothers and wives; how we long to do what is right, but lose our tempers, get obsessed with how we are being treated and allow bitterness to take root. It was encouraging to know we share the same struggles and that God has given us the way to know how to deal with them: His Word.
After spending time at church yesterday and doing devotions with Gary, I know I also struggle with loving God when I've been hurt. My first inclination is to lash out and hurt whoever hurt me. I hold back forgiveness thinking I can't let someone get away with hurting me. This is not the gospel. This is not what being a Christian is. God expects me to behave and act like Christ, His Son. His Son who, while I was still a sinner and hated Him, loved me and died a humiliating death in my place. He paid the price for my unwillingness to forgive others and love God.
What a wonderful God I serve. What a blessing to know He loves me even when I hurt him and He refuses to hold back forgiveness. He gives me His forgiveness so willingly and I will never, ever deserve it.
The hymn we sang during family worship last night was Amazing Love. Here are the words, so beautiful, so sweet, so true:
And can it be that I should gain an interest in the Saviour's blood? Died he for me, who cause his pain? For me, who him to death pursued? Amazing Love, how can it be, that thou my God shouldst die for me?
Amazing Love! How can it be that thou my God shouldst die for me?
'Tis mystery all! The Immortal dies; who can explore his strange design? In vain the firstborn seraph tries to sound the depths of love divine. 'Tis mercy all! Let earth adore, let angel minds inquire no more.
Amazing Love! How can it be that thou my God shouldst die for me?
He left his Father's throne above (so free, so infinite His grace!) humbled Himself (so great his love!) and bled for all his chosen race. 'Tis mercy all, immense and free; for O my God, it found out me.
Amazing Love! How can it be that thou my God shouldst die for me?
Long my imprisoned spirit lay fast bound in sin and nature's night; thine eye diffused a quickening ray; I woke, the dungeon flamed with light; my chains fell off, my heart was free; I rose, went forth, and followed Thee.
Amazing Love! how can it be that thou my God shouldst die for me?
No condemnation now I dread; Jesus, and all in him, is mine! Alive in him, my living Head, and clothed in righteousness divine, bold I approach the eternal throne, and claim the crown, through Christ my own.
Amazing Love! How can it be that thou my God shouldst die for me?
(written by Charles Wesley, 1738)
Friday, June 11, 2010
Luke's News...
Yesterday, Luke was evaluated by a pediatric neurosurgeon. We got additional x-rays and a CT scan done of his neck. After looking at those, the dr said that Luke will need a surgical intervention to protect his spinal cord from any damage that may occur from the instability of his c1c2 vertebrae (a common occurance in children with Luke's specific form of dwarfism). Before we make any decisions regarding the type of surgery or when the surgery will be, Dr. Rozzelle first wants Luke to have an MRI. Dr. Rozzelle's nurse is trying to schedule the MRI for June 24th (we will be going up there for an orthopedic evaluation on that day, already). Luke will have to go under general anesthesia for the MRI because the MRI takes 30-45 min and Luke has to be still that whole time. After the MRI, Dr. Rozzelle will look at the results and then we will discuss what he thinks is the best course of action for Luke.
I'll try to explain the problem with Luke's neck... Basically, because his c2 vertebrae is missing the odontoid process (think of a little 'post' that holds the c1 in place) the c1 vertebrae is moving around and could severely damage his spinal cord. This particular area of the spinal cord, if damaged, could result in not only paralysis of the legs, but his arms, lungs, diaphragm, bodily functions, etc would be affected.
I would like to ask you to please pray for Luke's neck, the wisdom of Dr. Rozzelle (who has only had one other patient who has had Luke's condition- meaning SEDC- and hasn't had to do any surgery on this kid yet. However, he has done c1c2 fusions many many times), and for Gary and me to make decisions for Luke's health and protection.
Gary and I were hoping that we would be able to just monitor this condition, that it wasn't this serious. We are both a little overwhelmed and discouraged by the news. However, we know God is in control. He has taken care of Luke from the beginning and will continue to do so, of this we have no doubt. We are praying for a miracle. We are praying that God will heal his neck. At the same time, we know that His will will be done and He loves Luke more than we do. He will do what is best for Luke and we trust in Him to take care of Luke in every way.
Thank you for praying for us. Thank you for loving our family and our Luke. May the peace and love of God sustain you.
I'll try to explain the problem with Luke's neck... Basically, because his c2 vertebrae is missing the odontoid process (think of a little 'post' that holds the c1 in place) the c1 vertebrae is moving around and could severely damage his spinal cord. This particular area of the spinal cord, if damaged, could result in not only paralysis of the legs, but his arms, lungs, diaphragm, bodily functions, etc would be affected.
I would like to ask you to please pray for Luke's neck, the wisdom of Dr. Rozzelle (who has only had one other patient who has had Luke's condition- meaning SEDC- and hasn't had to do any surgery on this kid yet. However, he has done c1c2 fusions many many times), and for Gary and me to make decisions for Luke's health and protection.
Gary and I were hoping that we would be able to just monitor this condition, that it wasn't this serious. We are both a little overwhelmed and discouraged by the news. However, we know God is in control. He has taken care of Luke from the beginning and will continue to do so, of this we have no doubt. We are praying for a miracle. We are praying that God will heal his neck. At the same time, we know that His will will be done and He loves Luke more than we do. He will do what is best for Luke and we trust in Him to take care of Luke in every way.
Thank you for praying for us. Thank you for loving our family and our Luke. May the peace and love of God sustain you.
Wednesday, June 2, 2010
Changes at our Home!
Over the Memorial Day weekend, we had our living room carpet ripped up and laminate floor put down. We also started painting the pergolas out back... Some photos of the progress:
the old carpet
rippin it up!
makin progress!
OH YEAH! WE'RE LOVIN' IT!
The Pergola Progress:
prep work
staining/painting the beams
Looks so good!
I'm not sure when we'll finish... we were rudely interrupted by a huge thunderstorm! AND, it's been raining atleast once a day since Sunday and we need the wood to dry out. Oh well! It'll wait on us, I guess! :0)
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