Its been a busy day, a flurry of activities around here. I thought I would update you about yesterday's appointment. Nothing earth shattering to report, long story short, they will be doing a simple blood test on Kurt, myself and Karter to look to see if there are any chromosomal disorders that are the cause for Karter's Epilepsy.
Basically, we talked with the neurologist who specializes in genetics and genetic research in Epilepsy. She was very informative and I enjoyed the information that I learned. She talked with us about family genes and my pregnancy and other factors that could have caused Karter's seizure disorder. When it all boiled down, it appeared that there would be no reason that my perfectly normal pregnancy or our family genetics would have affected or caused Karter's condition. Most likey, it was "just one of those things".
When they do the test, they will color each of our blood a different color and match up of our chromosomes to Karter's. That will show if there are things added or missing in Karter's, those types of things would indicate a chromosomal disorder. In most cases, Epilepsy is a symptom of something else. This is not a new diagnosis or something else they are looking to treat, but rather a baseline for answers for the future and for why Karter's development and growth is so slow.
In 50% of all Epilepsy cases, there is no found cause. This is because our results are only as good as our technology for testing. We can view the brain through CAT scan or MRI, but that still does not show everything. There are areas that we are still unable to see with modern technology. There are over 800 cases in BC alone, where children have unexplained Epilepsy. I found those statistics astonishing, but very interesting.
We have been told that this test that they are doing is in the research stages. Karter will be 1 of 50 in the study. The test is 100x magnification rather than the 10x magnification that they use in the approved test that is currently used for genetic testing. So if anything, we can help them find a way to help others as well.
It always amazes me the opportunities that God puts in our path. The resources available to us, the medical care, the people in our lives, etc. I can only see it as the favor of the Lord. Little divine appointments all along the way.
Saturday, July 26, 2008
My article for work...
As most of you know, I work from home, for a company called Praise Charts. I LOVE what I do! It is some customer service, some accounts receivable and my newest venture has to do with the overseeing the arraigning of songs and copyright administration.
It suits so many needs for us. I can work from home, suiting my hours and my schedule and I can fill my love for admin type work, plus I can help out with the bills each month.
We have a part of our site, called PC live. That is a resource based site, where music pastors and worship leaders can go for ideas and other things. We will be releasing the new Hillsong Cd "Our God Saves" in the next few weeks, but I have heard and been touched by the songs already. One of which is 'Desert Song' (I posted about it a few weeks back).
I was asked to write an article for the PC live site about how it pertained to our situation and what it touched me so much. I thought you might want to read it. So here it is:
The newly released Hillsong Album, "This Is Our God" is a collection of beautiful songs that have come from the deepest caverns of people’s trials and journeys with God and has captured the heart of who Christ is in us. This album is another that will lead the global church in cutting edge worship, with such powerful songs such as Healer and Desert Song.
I had been asked to comment a little bit on Desert Song. This song has become an anthem for me. My "Lifesong" if you will. The first time I heard it, I was able to identify with the cry of Jill’s heart.
I am a mother of two beautiful children, 3½ and 2. My youngest, a son, was born a healthy little guy…full of wonder in his eyes and with much strength. When you have a child, you dream for them, you have great expectations on what they will be able to achieve and do in life. And, you wait in expectancy for those things to play out. That is the fun of being a parent.
At three months old, my growing boy started to have seizures. We spent many weeks in and out of hospital trying not only to control them but to find a reason to explain them. As you can imagine, our world was shattered. The unknown was closing in all around us. In the months preceding the first seizures, he developed a condition called Infantile Spasm Disorder. This is a chaotic brain rhythm, which can be detrimental to development if not contained. We were able to control these luckily with medication. In the meantime, it was found that our son had an area of abnormality in his right frontal lobe. Thus a reason for the seizures. At ten months, he underwent neurosurgery to remove this portion is his brain.
After surgery we had three months seizure free and since that time two other periods of time where he was seizure free. However, to this day, he still has periodical seizures and his development is very delayed. The feeling of the doctors is that there are other areas that they cannot find that are abnormal as well. So from what the doctors see, this may be the way things look for him.
I tell you this from a very clinical standpoint, so that you can understand the facts. But, I have a much bigger investment with the Great Physician. I put my trust in Him not in man. I am thankful for the provision of doctors and for the favour in our treatment thus far. But I choose every day, to believe that this is a season. A season for growth, a season for trust and even a season of discomfort. But out of this season, and throughout our journey, God had still remained God.
Did I expect my life to look this way? Certainly not. However, I accept this path. And I can honestly tell you, that every day I choose to count it all joy. Does that strength come from within myself? No, it comes from the One who gives me what I need for today. I stand today with a faith that is strong enough to move mountains. Strong enough to keep me from becoming a puddle on the floor. Strong enough to face the giants of fear and to battle the unknown. My son will be well. I stand on God’s promise for that. Do I crumble at times? Of course I do, I am human. This is hard, but it is in those times, that I pick myself up and say “Thank You, Jesus for being with me in this dessert, in this dry land. I will sing Your Praises. In spite of my circumstances, in spite of what I see with my human eyes today. In spite of how disappointed I feel. I will worship You.” That is my sole purpose here in this life, to worship. We will be victorious in Christ. He is our Conqueror and we are victorious in Him. This may be a refining process and for that I am fully accepting.
In the song "Desert Song", I love the line that says "I am a conqueror and co-heir with Christ". But my favourite part is where it proclaims:
All of My Life,
In every Season,
You are still God,
I have a reason to sing,
I have a reason to worship
That is it, people. In spite of it all, will we choose to sing? Will we still worship Him? Well, for me, it is a resounding "Yes!" Sometimes, it has been the hardest thing to do, to open my mouth and proclaim the promises that I have a hard time understanding and at times, believing. But honestly, the peace, the joy and the strength that has come from that sacrifice, is why I am here today. I still hope, I still believe and I still stand because God honours my persistence, especially in the hardest times. We will see victory over this situation. Even in this desert, "refine me Lord through the flame"
It suits so many needs for us. I can work from home, suiting my hours and my schedule and I can fill my love for admin type work, plus I can help out with the bills each month.
We have a part of our site, called PC live. That is a resource based site, where music pastors and worship leaders can go for ideas and other things. We will be releasing the new Hillsong Cd "Our God Saves" in the next few weeks, but I have heard and been touched by the songs already. One of which is 'Desert Song' (I posted about it a few weeks back).
I was asked to write an article for the PC live site about how it pertained to our situation and what it touched me so much. I thought you might want to read it. So here it is:
The newly released Hillsong Album, "This Is Our God" is a collection of beautiful songs that have come from the deepest caverns of people’s trials and journeys with God and has captured the heart of who Christ is in us. This album is another that will lead the global church in cutting edge worship, with such powerful songs such as Healer and Desert Song.
I had been asked to comment a little bit on Desert Song. This song has become an anthem for me. My "Lifesong" if you will. The first time I heard it, I was able to identify with the cry of Jill’s heart.
I am a mother of two beautiful children, 3½ and 2. My youngest, a son, was born a healthy little guy…full of wonder in his eyes and with much strength. When you have a child, you dream for them, you have great expectations on what they will be able to achieve and do in life. And, you wait in expectancy for those things to play out. That is the fun of being a parent.
At three months old, my growing boy started to have seizures. We spent many weeks in and out of hospital trying not only to control them but to find a reason to explain them. As you can imagine, our world was shattered. The unknown was closing in all around us. In the months preceding the first seizures, he developed a condition called Infantile Spasm Disorder. This is a chaotic brain rhythm, which can be detrimental to development if not contained. We were able to control these luckily with medication. In the meantime, it was found that our son had an area of abnormality in his right frontal lobe. Thus a reason for the seizures. At ten months, he underwent neurosurgery to remove this portion is his brain.
After surgery we had three months seizure free and since that time two other periods of time where he was seizure free. However, to this day, he still has periodical seizures and his development is very delayed. The feeling of the doctors is that there are other areas that they cannot find that are abnormal as well. So from what the doctors see, this may be the way things look for him.
I tell you this from a very clinical standpoint, so that you can understand the facts. But, I have a much bigger investment with the Great Physician. I put my trust in Him not in man. I am thankful for the provision of doctors and for the favour in our treatment thus far. But I choose every day, to believe that this is a season. A season for growth, a season for trust and even a season of discomfort. But out of this season, and throughout our journey, God had still remained God.
Did I expect my life to look this way? Certainly not. However, I accept this path. And I can honestly tell you, that every day I choose to count it all joy. Does that strength come from within myself? No, it comes from the One who gives me what I need for today. I stand today with a faith that is strong enough to move mountains. Strong enough to keep me from becoming a puddle on the floor. Strong enough to face the giants of fear and to battle the unknown. My son will be well. I stand on God’s promise for that. Do I crumble at times? Of course I do, I am human. This is hard, but it is in those times, that I pick myself up and say “Thank You, Jesus for being with me in this dessert, in this dry land. I will sing Your Praises. In spite of my circumstances, in spite of what I see with my human eyes today. In spite of how disappointed I feel. I will worship You.” That is my sole purpose here in this life, to worship. We will be victorious in Christ. He is our Conqueror and we are victorious in Him. This may be a refining process and for that I am fully accepting.
In the song "Desert Song", I love the line that says "I am a conqueror and co-heir with Christ". But my favourite part is where it proclaims:
All of My Life,
In every Season,
You are still God,
I have a reason to sing,
I have a reason to worship
That is it, people. In spite of it all, will we choose to sing? Will we still worship Him? Well, for me, it is a resounding "Yes!" Sometimes, it has been the hardest thing to do, to open my mouth and proclaim the promises that I have a hard time understanding and at times, believing. But honestly, the peace, the joy and the strength that has come from that sacrifice, is why I am here today. I still hope, I still believe and I still stand because God honours my persistence, especially in the hardest times. We will see victory over this situation. Even in this desert, "refine me Lord through the flame"
Thursday, July 24, 2008
Some thoughts...
Paige is out in the boat with Kurt and Grandpa this evening and Karter's schedule was a little different today. So I was left with a luxury I do not usually have...time to myself.
Instead of finishing the upstairs vacuuming and the laundry, I took some time to listen to a message online. The message was about persistence. Oh, how I was encouraged. I wanted to leave you with some thoughts that I took away. But first I will start with this -
You all have read along and some of you, walked along, this journey with Karter. You know that we stand on the promise that our son will be well. In spite of the things that are told to us by man, we believe in something much bigger. Call us disillusioned, crazy, in denial, whatever you will. This hope and faith is what gets us through from one day to the next. And if nothing else, it is what sustains us to keep pressing forward and not crumble on the floor.
I was talking with someone last week, she was telling me how she viewed how we walked this journey. She was commenting on our strength and the fact that God chose us because we were the only ones that they know that could have handled this. I thanked her for her comments, but quickly refuted them. I went on to tell her that people see the good in all of this. After I have filtered my feelings and emotions, got a handle on it and put my logical plan into action. People do not see the tears or angry words I speak to God. (oh yes there are some) The ultimatums I have made, the promises etc. I don't post those kinds of things here, for obvious reasons. But in those times, I always seem to come through with a stronger handle on who I am in Christ, and stronger faith in what God has promised me in His word.
I will tell you this, last week, I was angry with God. I asked Him to show me something, some kind of glimpse into what is to come with Karter. I know that faith is putting our thoughts and hopes in what is unseen, but I have done that for so long that I felt I did not have it anymore. I need to see something...after all, I am human!
So tonight as I listened to this message this is what I took away from it. The speaker was saying that some breakthroughs, some healing etc, come easy. We ask...we receive...period. And then there are others that come through persistence.
In the bible, Hannah prayed for years with persistence, for a child. When she woke, it was the first thing on her mind...she prayed. In the night, when she was unable to sleep...she prayed. She went through the day and thought of it...she prayed. Every breath she prayed for her need. It was that supernatural persistence, (years in her case) that brought her a child.
"Persistence is locking into something that you KNOW is the will of God". Wow that was a powerful statement for me! Locking into it... persisting...everyday, with every extra breath...every moment I think about it..persisting...
"Some breakthroughs come through friendship, some breakthroughs come through divine justice. Other breakthroughs come through nothing but a well you can touch only through sacrificial persistence"
The pastor left the congregation with Psalms 27. He said that he felt the Lord told him to tell the church that "this will feed you when you need an answer. Look to it often. This will supply what you need, take it and feed your soul"
The LORD is my light and my salvation;
whom shall I fear?
The LORD is the strength of my life;
of whom shall I be afraid?
When the wicked, even mine enemies and my foes,
came upon me to eat up my flesh,
they stumbled and fell.
Though a host should encamp against me,
my heart shall not fear:
though war should rise against me,
in this will I be confident.
One thing have I desired of the LORD,
that will I seek after;
that I may dwell in the house of the LORD
all the days of my life,
to behold the beauty of the LORD,
and to inquire in his temple.
For in the time of trouble he shall hide me in his pavilion:
in the secret of his tabernacle shall he hide me;
he shall set me up upon a rock.
And now shall mine head be lifted up
above mine enemies round about me:
therefore will I offer in his tabernacle sacrifices of joy;
I will sing, yea, I will sing praises unto the LORD.
Hear, O LORD, when I cry with my voice:
have mercy also upon me, and answer me.
When thou saidst, Seek ye my face;
my heart said unto thee,
Thy face, LORD, will I seek.
Hide not thy face far from me;
put not thy servant away in anger:
thou hast been my help;
leave me not, neither forsake me,
O God of my salvation.
When my father and my mother forsake me,
then the LORD will take me up.
Teach me thy way, O LORD,
and lead me in a plain path,
because of mine enemies.
Deliver me not over unto the will of mine enemies:
for false witnesses are risen up against me,
and such as breathe out cruelty.
I had fainted, unless I had believed
to see the goodness of the LORD in the land of the living.
Wait on the LORD:
be of good courage, and he shall strengthen thine heart:
wait, I say, on the LORD.
So I leave you with this... Are you needing breakthrough? Do you feel like God does not hear you or that He is choosing not to answer your prayers? Be persistent! This may not be one of those things that come easy. I know our answer for Karter has not come easy. BUT I do know this, I am prepared to be patient (as much as it kills me to do so) and to tap into that well of supernatural persisitence
Instead of finishing the upstairs vacuuming and the laundry, I took some time to listen to a message online. The message was about persistence. Oh, how I was encouraged. I wanted to leave you with some thoughts that I took away. But first I will start with this -
You all have read along and some of you, walked along, this journey with Karter. You know that we stand on the promise that our son will be well. In spite of the things that are told to us by man, we believe in something much bigger. Call us disillusioned, crazy, in denial, whatever you will. This hope and faith is what gets us through from one day to the next. And if nothing else, it is what sustains us to keep pressing forward and not crumble on the floor.
I was talking with someone last week, she was telling me how she viewed how we walked this journey. She was commenting on our strength and the fact that God chose us because we were the only ones that they know that could have handled this. I thanked her for her comments, but quickly refuted them. I went on to tell her that people see the good in all of this. After I have filtered my feelings and emotions, got a handle on it and put my logical plan into action. People do not see the tears or angry words I speak to God. (oh yes there are some) The ultimatums I have made, the promises etc. I don't post those kinds of things here, for obvious reasons. But in those times, I always seem to come through with a stronger handle on who I am in Christ, and stronger faith in what God has promised me in His word.
I will tell you this, last week, I was angry with God. I asked Him to show me something, some kind of glimpse into what is to come with Karter. I know that faith is putting our thoughts and hopes in what is unseen, but I have done that for so long that I felt I did not have it anymore. I need to see something...after all, I am human!
So tonight as I listened to this message this is what I took away from it. The speaker was saying that some breakthroughs, some healing etc, come easy. We ask...we receive...period. And then there are others that come through persistence.
In the bible, Hannah prayed for years with persistence, for a child. When she woke, it was the first thing on her mind...she prayed. In the night, when she was unable to sleep...she prayed. She went through the day and thought of it...she prayed. Every breath she prayed for her need. It was that supernatural persistence, (years in her case) that brought her a child.
"Persistence is locking into something that you KNOW is the will of God". Wow that was a powerful statement for me! Locking into it... persisting...everyday, with every extra breath...every moment I think about it..persisting...
"Some breakthroughs come through friendship, some breakthroughs come through divine justice. Other breakthroughs come through nothing but a well you can touch only through sacrificial persistence"
The pastor left the congregation with Psalms 27. He said that he felt the Lord told him to tell the church that "this will feed you when you need an answer. Look to it often. This will supply what you need, take it and feed your soul"
The LORD is my light and my salvation;
whom shall I fear?
The LORD is the strength of my life;
of whom shall I be afraid?
When the wicked, even mine enemies and my foes,
came upon me to eat up my flesh,
they stumbled and fell.
Though a host should encamp against me,
my heart shall not fear:
though war should rise against me,
in this will I be confident.
One thing have I desired of the LORD,
that will I seek after;
that I may dwell in the house of the LORD
all the days of my life,
to behold the beauty of the LORD,
and to inquire in his temple.
For in the time of trouble he shall hide me in his pavilion:
in the secret of his tabernacle shall he hide me;
he shall set me up upon a rock.
And now shall mine head be lifted up
above mine enemies round about me:
therefore will I offer in his tabernacle sacrifices of joy;
I will sing, yea, I will sing praises unto the LORD.
Hear, O LORD, when I cry with my voice:
have mercy also upon me, and answer me.
When thou saidst, Seek ye my face;
my heart said unto thee,
Thy face, LORD, will I seek.
Hide not thy face far from me;
put not thy servant away in anger:
thou hast been my help;
leave me not, neither forsake me,
O God of my salvation.
When my father and my mother forsake me,
then the LORD will take me up.
Teach me thy way, O LORD,
and lead me in a plain path,
because of mine enemies.
Deliver me not over unto the will of mine enemies:
for false witnesses are risen up against me,
and such as breathe out cruelty.
I had fainted, unless I had believed
to see the goodness of the LORD in the land of the living.
Wait on the LORD:
be of good courage, and he shall strengthen thine heart:
wait, I say, on the LORD.
So I leave you with this... Are you needing breakthrough? Do you feel like God does not hear you or that He is choosing not to answer your prayers? Be persistent! This may not be one of those things that come easy. I know our answer for Karter has not come easy. BUT I do know this, I am prepared to be patient (as much as it kills me to do so) and to tap into that well of supernatural persisitence
Quick Update
Just thought I would let you know that we will be going to Children's for an appointment Friday at 2:30. Nothing baffling going on here, our neurologist has asked for another neurologist to consult on Karter's case. She specializes in genetics.
Basically at this point, there is nothing new that they are looking for, they pretty much have a handle on that. It is really just a fact finding mission, to get specific answers as to what(if anything)the exact underlining cause of Karter's global delays are. And to maybe get someone else's opinion on why his head would not be growing. There is no cure for 'Cortical Dysplasia' (that is his diagnosis at this time), it's definition means "abnormality of the brain".
So basically, tomorrow we are going to answer a bunch of questions and she can maybe share some other ideas with our neurologist as well. Just thought you should know. We can always use your prayers as we go. I will update when we get back.
Basically at this point, there is nothing new that they are looking for, they pretty much have a handle on that. It is really just a fact finding mission, to get specific answers as to what(if anything)the exact underlining cause of Karter's global delays are. And to maybe get someone else's opinion on why his head would not be growing. There is no cure for 'Cortical Dysplasia' (that is his diagnosis at this time), it's definition means "abnormality of the brain".
So basically, tomorrow we are going to answer a bunch of questions and she can maybe share some other ideas with our neurologist as well. Just thought you should know. We can always use your prayers as we go. I will update when we get back.
I am getting to it.....
Just so that you know, I am going to get that progress video up of Karter. I have not forgotten. I have been working on it over the past while. The summer definitely has sprung into action around here and my time...well out the window that has gone!
So just please be patient, I will get it on here. My hope is to have it edited and on the site by next week. We will see....
So just please be patient, I will get it on here. My hope is to have it edited and on the site by next week. We will see....
Saturday, July 12, 2008
Karter's 2nd Birthday Party
We did a Nemo party for Karter's 2nd birthday. The weather was gorgeous. The kids played on the bouncy castle and on the playground outside while the adults enjoyed the beautiful weather and the company of each other. We had cake and munchies.
Thanks to all of you who contributed to Karter's horse back riding therapy. He will be able to do two 6 week sessions, what a blessing. Also, thanks for Grandma and Opa for the new stroller, it will make life so much easier for us.
Thanks to all of you who contributed to Karter's horse back riding therapy. He will be able to do two 6 week sessions, what a blessing. Also, thanks for Grandma and Opa for the new stroller, it will make life so much easier for us.
Thursday, July 10, 2008
Happy 2nd Birthday My Boy!
Well as cliche as it sounds, 'Where does the time go?' I cannot believe Karter is 2.
We will celebrate officially tomorrow, but with all the goings on that the day will bring, I am sure there will not be sufficient time to Blog. We will have a party to celebrate in the evening. I will post pictures later this weekend.
To my beautiful little boy:
Little did I know when you came into my world 2 years ago, that you would change me so dramatically. You have taught me so much and I cannot believe how my love for you continues to explode bigger and bigger every day. You are a remarkable little guy. You are an over comer! You are a miracle in every true sense of the word. Never have I met anyone who could endure the challenges that you do and still keep a easy going attitude and a smile on your face. You are such a ray of sunshine to me and to everyone who shares a part of who you are. Keep moving forward you will make it! Your determination will shine through and carry us to the end. My prayer for you this year is that we would see miracles before our eyes. That you would astonish us with your progress and that you would keep being who you are in the midst of all of it. I love you son, you have been my blessing!
So, here are the official 2 year old pictures, taken this evening.
We will celebrate officially tomorrow, but with all the goings on that the day will bring, I am sure there will not be sufficient time to Blog. We will have a party to celebrate in the evening. I will post pictures later this weekend.
To my beautiful little boy:
Little did I know when you came into my world 2 years ago, that you would change me so dramatically. You have taught me so much and I cannot believe how my love for you continues to explode bigger and bigger every day. You are a remarkable little guy. You are an over comer! You are a miracle in every true sense of the word. Never have I met anyone who could endure the challenges that you do and still keep a easy going attitude and a smile on your face. You are such a ray of sunshine to me and to everyone who shares a part of who you are. Keep moving forward you will make it! Your determination will shine through and carry us to the end. My prayer for you this year is that we would see miracles before our eyes. That you would astonish us with your progress and that you would keep being who you are in the midst of all of it. I love you son, you have been my blessing!
So, here are the official 2 year old pictures, taken this evening.
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