Praise Be to God!
Tuesday, April 21, 2015
Friday, August 10, 2012
This Kind Does No Go Out Except by Prayer and..........
Where do I even begin....I have been wanting to write the post for quite awhile, But how do you even start to write about a God given MIRACLE!!!! How do you explain in written words what an amazing God we serve and what He has done for us! It is too amazing for words! I will try my best and as I share this please know my heart is in EXTREME state of joy to see the works of the LORD!! I will start off with the words of David in Psalm 145. David writes it best. For this is how I feel as well.
For more about this diet please visit
www.charliefoundation.org
The Lord extolled for His Goodness
A praise to the LORD!!
I will extol You, my God, O King,
And I will bless Your name forever
and ever.
Everyday I will bless You,
and I will praise Your name forever
and ever.
Great is the Lord, and highly to be
praised,
And His greatness is unsearchable.
One generation will praise Your
works to another,
AND SHALL DECLARE YOUR MIGHTY ACTS.
On the glorious splendor of Your majesty
And on YOUR WONDERFUL WORKS, I will meditate.
Men shall speak of the power of Your awesome acts.
I WILL TELL OF YOUR GREATNESS.
They shall eagerly utter the memory of Your abundant goodness
And will shout joyfully of Your righteousness.
The Lord is Gracious and merciful;
Slow to anger and great in lovingkindness.
The Lord is good to all,
And His mercies are over all His works
All Your works shall give thanks to You, O Lord,
and Your Godly ones shall bless You.
THEY SHALL SPEAK OF THE GLORY OF YOUR KINGDOM
AND TALK OF YOUR POWER;
To make know to the sons of men
Your mighty acts
And the glory of the majesty of Your kingdom.
Your kingdom is an everlasting kingdom,
And your dominion endures throughout all generations.
The Lord sustains all that fall
And raises up all who are bowed down.
The eyes of all look to You,
AND YOU GIVE THEM THIER FOOD IN DUE TIME.
You open Your hand
And satisfy the desire of every living thing.
The Lord is righteous in all His ways
And kind in all His deeds
The Lord is near to all who call upon Him,
To all who call to Him in truth.
He will fulfill the desire of those who fear Him;
HE WILL ALSO HEAR THEIR CRIES AND SAVE THEM.
The Lord keeps all who love Him,
But all the wicked He will destroy.
MY MOUTH WILL SPEAK THE PRAISE OF THE LORD,
AND ALL FLESH WILL BLESS HIS HOLY NAME FOREVER.
Not every day do you get to witness a real life, God given, Miracle.......But we have!! I will start from the beginning for those of you who have not heard about our journey. I will attempt to make it the condensed version!!! For details read post titled "Update Update" and on.
In January of 2011 Eli had his first seizure. He had just turned 3 two weeks prior. It was the typical type of seizure that we all think of when you hear the word seizure. He had a Tonic Clonic Seizure, also known as a grand mal. Convulsions, gasping for air, eyes rolled back...the whole nine yards.
He experienced several of these that month. This was the beginning of our horrendous battle with epilepsy.
In the following months Eli started to experience two additional types of seizures. At first they were subtle. Then they became more violent. By March and April he was experiencing atypical absence seizures and myolconic seizures. At this point he was diagnosed with a severe form of childhood epilepsy, Myoclonic Astatic Epilepsy. By July the myoclonic seizures were so violent and injurious, the need for Eli's first helmet was prompted. And time went on from there the seizure came more frequently and more violently coupled with the drastic side effects and the zombie like effect of the medications we were saying good bye to the little boy we all once knew. The Lord was so kind to us in this time and He did allow us windows of time were Eli was Miraculously seizure free for a short times. But sure enough the seizures would come back in full force with horrible injuries and he required constant supervision and care. We would eventually end up failing 8 different medications. The medications were almost as bad as the seizures. Mood swings, depression, lethargy, cognitive delay, loss of vocabulary....and the list goes on. It was nothing for us to see upwards of 600+ seizures a day.
The different seizures would last from anywhere from 3 seconds to 3-5 minutes. I think by October or November He was on his second and third helmet, Finally in a full face shield helmet!
We continually throughout this whole process had researched and sought second and third opinions. Which were very much in favor of the option I was desperately seeking.
I eventually found myself sitting in the office of Dr. James Pappas, Pediatric Neurologist with Peyton Manning's Children's Hospital, St Vincent. Desperate to start a treatment that I had found while researching. It was called the Ketogenic Diet. This diet was proven to eliminate seizures in individuals with "untreatable" seizure disorders (epilepsy). Waaay back in April or March, almost 8 months prior, I had asked our first doctor ( at an unmentionable facility!) if this was a valid treatment option, in fact I practically begged him to let us try it. He said no right away and gave Eli yet again another medication to try! This very effective treatment was not even given to us as an option to treat his epilepsy! The first mention to a certain un-named doctor about using it was shot down immediately. I was heartbroken, but continued to seek better opinions. I have to say, that doctor did eventually offered us the opportunity to start the diet....After we told him we were transferring to a different facility and would need a copy of his medical records!!
As I sat in Dr. Pappas office I prayed he would be supportive of the Ketogenic Diet. Dr. Pappas was wonderful and everything I had hopped for! He was certainly in favor of the Ketogenic Diet. We established a plan that included scheduling a time to get Eli into the hospital to initiate the diet. An answer to prayer.
Unavoidable circumstances caused a delay in the start of the diet, however Tuesday, April 17th 2012, Eli was admitted to Peyton Manning's Children's Hospital and Started the diet! We sat back and watched in amazement! In the next two days we watched his seizures slowly disappear! In utter Amazement and Utter JOY!! We watched our son come back to us!! Not only was he seizure free in 2 days it was like a fog had lifted off of him. PRAISE BE TO GOD!!!! WE HAVE OUR SON BACK!
He went from 100-600+ seizures a day.......TO NONE!!!!!
I want to share some pictures so you can have a visual of this MIRACLE!!!
He experienced several of these that month. This was the beginning of our horrendous battle with epilepsy.
In the following months Eli started to experience two additional types of seizures. At first they were subtle. Then they became more violent. By March and April he was experiencing atypical absence seizures and myolconic seizures. At this point he was diagnosed with a severe form of childhood epilepsy, Myoclonic Astatic Epilepsy. By July the myoclonic seizures were so violent and injurious, the need for Eli's first helmet was prompted. And time went on from there the seizure came more frequently and more violently coupled with the drastic side effects and the zombie like effect of the medications we were saying good bye to the little boy we all once knew. The Lord was so kind to us in this time and He did allow us windows of time were Eli was Miraculously seizure free for a short times. But sure enough the seizures would come back in full force with horrible injuries and he required constant supervision and care. We would eventually end up failing 8 different medications. The medications were almost as bad as the seizures. Mood swings, depression, lethargy, cognitive delay, loss of vocabulary....and the list goes on. It was nothing for us to see upwards of 600+ seizures a day.
The different seizures would last from anywhere from 3 seconds to 3-5 minutes. I think by October or November He was on his second and third helmet, Finally in a full face shield helmet!
We continually throughout this whole process had researched and sought second and third opinions. Which were very much in favor of the option I was desperately seeking.
I eventually found myself sitting in the office of Dr. James Pappas, Pediatric Neurologist with Peyton Manning's Children's Hospital, St Vincent. Desperate to start a treatment that I had found while researching. It was called the Ketogenic Diet. This diet was proven to eliminate seizures in individuals with "untreatable" seizure disorders (epilepsy). Waaay back in April or March, almost 8 months prior, I had asked our first doctor ( at an unmentionable facility!) if this was a valid treatment option, in fact I practically begged him to let us try it. He said no right away and gave Eli yet again another medication to try! This very effective treatment was not even given to us as an option to treat his epilepsy! The first mention to a certain un-named doctor about using it was shot down immediately. I was heartbroken, but continued to seek better opinions. I have to say, that doctor did eventually offered us the opportunity to start the diet....After we told him we were transferring to a different facility and would need a copy of his medical records!!
As I sat in Dr. Pappas office I prayed he would be supportive of the Ketogenic Diet. Dr. Pappas was wonderful and everything I had hopped for! He was certainly in favor of the Ketogenic Diet. We established a plan that included scheduling a time to get Eli into the hospital to initiate the diet. An answer to prayer.
Unavoidable circumstances caused a delay in the start of the diet, however Tuesday, April 17th 2012, Eli was admitted to Peyton Manning's Children's Hospital and Started the diet! We sat back and watched in amazement! In the next two days we watched his seizures slowly disappear! In utter Amazement and Utter JOY!! We watched our son come back to us!! Not only was he seizure free in 2 days it was like a fog had lifted off of him. PRAISE BE TO GOD!!!! WE HAVE OUR SON BACK!
He went from 100-600+ seizures a day.......TO NONE!!!!!
I want to share some pictures so you can have a visual of this MIRACLE!!!
Eli before the Ketogenic Diet
And yes, he is actively seizing in this photo!
And Eli 3 Months after Starting the Ketogenic Diet
What an Amazing TRANSFORMATION!! The proof is in the pudding!! Keto pudding that is!
The Lord is Using this diet to heal Eli and we are in utter Amazement of the MIRACLE that we have witnessed!
Know if this wasn't amazing enough on its own....be prepared for goosebumps!
Four days prior to Eli's admittance into the hospital to start the diet God revealed something AMAZING to me.
This diet is a fasting diet. It basically keeps his body in a continual state of fasting or starvation. The medical community is uncertain why this is effective in seizure control......But I know why!!!!
I know a secret that they don't......Just listen to this!
This diet is a fasting diet. It basically keeps his body in a continual state of fasting or starvation. The medical community is uncertain why this is effective in seizure control......But I know why!!!!
I know a secret that they don't......Just listen to this!
Matthew 17:14-21
NKJV
And when they had come to the multitude, a man came to Him, kneeling down to Him and saying,
"Lord, have mercy on my son, for he is an epileptic and suffers severely; for he often falls into the fire and often into the water.
"So I brought him to Your disciples, but they could not cure him."
Then Jesus answered and said, "O faithless and perverse generation, how long shall I be with you? How long shall I bear with you? Bring him here to Me."
And Jesus rebuked the demon, and it came out of him; and the child was cured from that very hour.
Then the disciples came to Jesus privately and said, "Why could we not cast it out?"
So Jesus said to them, "Because of your unbelief; for assuredly, I say to you, if you have faith as a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you.
"However, this kind does not go out except by prayer and FASTING."
DID YOU CATCH THAT!!!!!!!! This kind does not go out except by PRAYER AND FASTING!!!
This is a FASTING diet!!!!
God tells us right there in the Bible that is why it works!!! Cause He said it!!!
Needless to say when I put two and two together I knew this diet was going to work...God does not make empty promises.
AND YES HIS PROMISES ARE TRUE AND ELI IS IN THE HEALING PROCESS!!!!
PRAISE BE TO GOD ON THE HIGHEST, LET MY VOICE OF PRAISE BE HEARD THROUGHOUT THE NATIONS!! I WILL SING OF HIS GOODNESS!
For more about this diet please visit
www.charliefoundation.org
Thursday, August 9, 2012
Update coming soon!!
Please prepare to hear a amazing story of God 's promises coming into reality......prepare to hear of a real life MIRACLE!!!!!
Monday, April 9, 2012
Rollercoaster Ride
This past wee has been a roller coaster so to speak. We have had good days and we have had bad days.
There are some absolutely amazing things that the Lord has done for us. I am so amazed by God's love for us and what He continues to do in our lives. Without Christ I would have no peace. He is our peace and we are to believe that in faith.....He loves us so much He gives us little pieces of evidence of His presence ....even though HE does not have to. He chooses to because He loves us so very much!
Let me tell you, we have experienced God this week. Early Monday morning last week, Eli started to go into a tonic-clonic (If you don't know what a tonic-clonic looks like please youtube it). As he started to convulse, Josh and I raced to the side of his bed and in desperation we cried out to the Lord and as I prayed, "Lord God you are the only one capable of sto....." Before I could even finish my sentence, Eli's seizure miraculously stopped in mid seizure. Usually these seizures last between 3 and 5 minutes and have a beginning middle and end. Not this one. God miraculously stopped it at 20 or 30 SECONDS!!! Praise be to God! Eli rolled over and continued to sleep peacefully.
God didn't choose to stop that seizure cause we are amazing, Godly people....He choose to stop it so that we could experience Him and comfort us and to give us hope! He didn't do it because of who we are, He did it because of who He is! That is a relief, cause we are so far away from being righteous on our own accord....Only through God's grace and mercy, salvation by way of the cross can we be righteous though Him for His Glory! We were AMAZED.
We had a Doctors appointment on Thursday this past week and we are very excited to let you all know that Eli will be starting the Ketogenic Diet on April 17th. We are very hopeful that the Lord will use this medical diet to give him seizure control. To know more about this diet please go to the link below in order to attain accurate information.
www.charliefoundation.org
We will be admitted into the hospital on Tuesday the 17th and we will start the process and stay in the hospital for the next three days. The hope is that he will have complete seizure control and be on the diet for 2 years and wean him off the diet and maintain a regular diet and still maintain complete seizure control.
In other words, God will use this diet to heal him! I am very excited about it!
My comfort comes from 2 Corinthians 1 this morning. The apostle Paul writes...
Paul, an apostle of Christ Jesus by the will of God, and Timothy our brother, To the church of God which is at Corinth with all the saints who are throughout Achaia:
Grace to you and peace from God our Father and the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort. For we do not want you to be unaware, brethren, of our affliction which came to us in Asia, that we were burdened excessively, beyond our strength, so that we despaired even of life; indeed, we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead; who delivered us from so great a peril of death, and will deliver us, He on whom we have set our hope. And He will yet deliver us, you also joining in helping us through your prayers, so that thanks may be given by many persons on our behalf for the favor bestowed on us through the prayers of many.
Paul indicated that he had been through something that he thought he would not survive while in Asia. They knew that God could deliver them and He did. He speaks of choosing to trust in Christ and not himself....Good choice! Paul set his hope on Christ as we should too. He thanks all the faithful Corinthians for their prayers of intersession and that he needed them now and in the future.
Intercessory Prayer is not utilized to change God's sovereign plan. It is used to demonstrate God's power.
God's plan is accomplished through our participation of prayer, not to change the plan, but to bring Glory to God. His plan doesn't change by our prayers. He just gives us a chance to be part of it so it might minister to others and bring others to salvation by them seeing the glory which Christ Jesus is. Hallelujah
Thank you to the faithful, for all your prayers! He will deliver us and you will be part of it! Glory to God in the highest!!!!!
There are some absolutely amazing things that the Lord has done for us. I am so amazed by God's love for us and what He continues to do in our lives. Without Christ I would have no peace. He is our peace and we are to believe that in faith.....He loves us so much He gives us little pieces of evidence of His presence ....even though HE does not have to. He chooses to because He loves us so very much!
Let me tell you, we have experienced God this week. Early Monday morning last week, Eli started to go into a tonic-clonic (If you don't know what a tonic-clonic looks like please youtube it). As he started to convulse, Josh and I raced to the side of his bed and in desperation we cried out to the Lord and as I prayed, "Lord God you are the only one capable of sto....." Before I could even finish my sentence, Eli's seizure miraculously stopped in mid seizure. Usually these seizures last between 3 and 5 minutes and have a beginning middle and end. Not this one. God miraculously stopped it at 20 or 30 SECONDS!!! Praise be to God! Eli rolled over and continued to sleep peacefully.
God didn't choose to stop that seizure cause we are amazing, Godly people....He choose to stop it so that we could experience Him and comfort us and to give us hope! He didn't do it because of who we are, He did it because of who He is! That is a relief, cause we are so far away from being righteous on our own accord....Only through God's grace and mercy, salvation by way of the cross can we be righteous though Him for His Glory! We were AMAZED.
We had a Doctors appointment on Thursday this past week and we are very excited to let you all know that Eli will be starting the Ketogenic Diet on April 17th. We are very hopeful that the Lord will use this medical diet to give him seizure control. To know more about this diet please go to the link below in order to attain accurate information.
www.charliefoundation.org
We will be admitted into the hospital on Tuesday the 17th and we will start the process and stay in the hospital for the next three days. The hope is that he will have complete seizure control and be on the diet for 2 years and wean him off the diet and maintain a regular diet and still maintain complete seizure control.
In other words, God will use this diet to heal him! I am very excited about it!
My comfort comes from 2 Corinthians 1 this morning. The apostle Paul writes...
Paul, an apostle of Christ Jesus by the will of God, and Timothy our brother, To the church of God which is at Corinth with all the saints who are throughout Achaia:
Grace to you and peace from God our Father and the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort. For we do not want you to be unaware, brethren, of our affliction which came to us in Asia, that we were burdened excessively, beyond our strength, so that we despaired even of life; indeed, we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead; who delivered us from so great a peril of death, and will deliver us, He on whom we have set our hope. And He will yet deliver us, you also joining in helping us through your prayers, so that thanks may be given by many persons on our behalf for the favor bestowed on us through the prayers of many.
Paul indicated that he had been through something that he thought he would not survive while in Asia. They knew that God could deliver them and He did. He speaks of choosing to trust in Christ and not himself....Good choice! Paul set his hope on Christ as we should too. He thanks all the faithful Corinthians for their prayers of intersession and that he needed them now and in the future.
Intercessory Prayer is not utilized to change God's sovereign plan. It is used to demonstrate God's power.
God's plan is accomplished through our participation of prayer, not to change the plan, but to bring Glory to God. His plan doesn't change by our prayers. He just gives us a chance to be part of it so it might minister to others and bring others to salvation by them seeing the glory which Christ Jesus is. Hallelujah
Thank you to the faithful, for all your prayers! He will deliver us and you will be part of it! Glory to God in the highest!!!!!
To quote the apostle Paul,
"The grace of the Lord Jesus be with you.
My love be with you all in Christ Jesus."
Sunday, April 1, 2012
Amazing Day
God is so good, He is so good! Despite the rough start to the day...two very large tonic clonic seizures before 7am...God has been faithful and Eli has had a wonderful day! After 2pm or so he started to have very few seizures and was up laughing playing and singing and dancing!! His smile was pure joy to my heart. I thank our Lord for the welcomed relief! What complete JOY!! What a day to celebrate Josh's birthday! The best gift he has ever received... to see his Eli back!
Towards the end of the evening he started to seize a little more, but still nowhere like he was this past week.
Every day is different and I will rejoice in these beautiful moments God has given us.
May the Lord have His way in my life.
Thank you for all your prayers and support! Love to you all!
Towards the end of the evening he started to seize a little more, but still nowhere like he was this past week.
Every day is different and I will rejoice in these beautiful moments God has given us.
May the Lord have His way in my life.
Thank you for all your prayers and support! Love to you all!
Every Victory is YOURS, God!
Hello to all and I want to thank you all so very much for your prayers...I can feel them and God is listening!
While today started out like yesterday for Eli, it was better in many respects. His seizures were still every minute or so most of the time, but there were several times today that he had 2-5 minute breaks between seizures. Which means VICTORY!! THat song just keeps going through my head. And today seemed like a small, but powerful victory! Towards the end of the evening he was up and playing hide and seek with Josh! I love it! still seizing, however by the grace of God he is able to function through them (actually more like around them). Most of his seizures were atypical absence seizures today, where his head nods a little and face twitches. That is pretty much all he had today. Only one or two myoclonic drops today...PRAISE THE LORD ALMIGHTY!
Thank you to all of you, my friends. I am so blessed by all of your encouraging words today thank you for the scriptures and love.
My heart is full and my hope meter is back to full! Christ is so true to His word...my anguish is gone.
I often say if this is the journey that God has asked us to walk than we will walk it in His name. We will endure, and consider all sufferings joy. Today I find Joy in knowing my savior and Lord of my life in a deeper and more personal way.
While today started out like yesterday for Eli, it was better in many respects. His seizures were still every minute or so most of the time, but there were several times today that he had 2-5 minute breaks between seizures. Which means VICTORY!! THat song just keeps going through my head. And today seemed like a small, but powerful victory! Towards the end of the evening he was up and playing hide and seek with Josh! I love it! still seizing, however by the grace of God he is able to function through them (actually more like around them). Most of his seizures were atypical absence seizures today, where his head nods a little and face twitches. That is pretty much all he had today. Only one or two myoclonic drops today...PRAISE THE LORD ALMIGHTY!
Thank you to all of you, my friends. I am so blessed by all of your encouraging words today thank you for the scriptures and love.
My heart is full and my hope meter is back to full! Christ is so true to His word...my anguish is gone.
I often say if this is the journey that God has asked us to walk than we will walk it in His name. We will endure, and consider all sufferings joy. Today I find Joy in knowing my savior and Lord of my life in a deeper and more personal way.
Saturday, March 31, 2012
Unfortunate turn of events
Well, after 10 days or so completely seizure free, we are back in the battle field! My heart is sad. At first it was about 20 seizures a day and as of Wednesday he seems to be in a constant state of seizing. What is going on!!! We ended up in the ER on Wednesday. We were concerned that he was in status epilepticus (continual seizing with no breaks). He was back in pull-ups. Unable to use the rest room due to the seizures. unable to communicate basic needs. Unable to eat...not really all that safe! It was a horribly helpless place to be. They gave him IV Ativan (lorazepam) and the seizures slowed to 1 every two minutes or so. We could breath a little, but still seems like too much for his little body. They sent us home and instructed us to use his rescue meds more often when this happens.
Thursday he just cried all day, he just wanted me to hold him. He required constant care. Having two other children that needed me as well and a household to run....It was more than I could handle alone...(Samuel ate a stale bag of famous amos cookies for breakfast!) I had to call for help! Blessed by amazing family! My sister in law came to get the other two kids and Josh's grandma came and cleaned and my aunt went to the grocery for us. Wow...what a day. Still seizing every minute, but not as long or as severe. Poor guy was just worn out. It was nice to just cuddle him and rest with him. We both needed it. He seemed to be very "drugged".
Friday started off pretty good...still seizing, but he was able to get down on the floor and play! That was nice to see. He was also able to participate in school too. That was a good feeling. He is so far behind, I love to see him have fun with our school work! However this did not last long. He had a tonic-clonic lasting three minutes during his nap. That makes two of "the big ones" this week. YUCK!! After that it was all down hill. He was back to what he was like when we took him to the ER on wednesday night. He was able to fall asleep and we are hopeful that if he gets some good sleep that he will be better in the morning. He has slept well. I know cause I have been up all night watching him! Nights like this are so hard to sleep! Honestly all I want to do is cry.
Those of you who know me, know that my "hope meter" is usually very high. I have to be honest with you all, tonight after watching Eli seize back to back again tonight, It is low. I don't question God...I know this is ultimately going to glorify Him and He will do amazing things through this (and already has). It is just so hard to see my sweet little 4 year old suffer. He is such a joy in our lives..I miss him so much! I know that the Lord can heal him and He will! It is getting really hard to be patient. I guess that is where the Lord wants me. It is hard to be so helpless. The scriptures say that when we are the weakest He is the strongest in our lives. THis is where faith comes in to believing. I can't see that right now, but I will choose to believe it because that is the truth and God's word is alive and active. I have to make a choice every day to believe in His words. If that is what he says then that is what He means. There is joy behind the overflowing tears, because I have faith in a Savior Jesus Christ that is much bigger than epilepsy. I recently received a card from a dear friend and she reminded me of my own words. "We are here on this earth to bring glory to God and the go home to heaven. The stuff we deal with here is all just piddly-dunk!"
It brings it back to the point that we are here on earth for such a short time and eternity is....well eternity and that is what we live for. Don't get me wrong...I am NOT suicidal.....but I can't wait for the Lord's return! I can't wait for our heavenly home. Where no illness or pain is present.
Josh was very wise this evening. He said that we get so use to "fixing" everything it is really hard when we absolutely have no control! When ALL is in God's hands. Come to think of it shouldn't that be where we are all at....letting him have complete control ( submitting ). What does complete submission look like?? Have I really submitted this! I feel like I have submitted it to Him....but on the other hand, if there was a healing for Eli laying on the floor I would grab it and use it without hesitation. I don't think that I would stop and ask the Lord if that is what He wanted or if it was OK...I would grab it. Maybe I need to rethink that one! Sorry, I am just typing "out loud".
Please pray for us...and thank you for the continued prayers! Please pray for my ability to completely submit this! Please pray protection over our marriage, please pray for safety and a hedge of protection over Eli. Please pray for Kylie and Samuel....they are a little stressed! Ultimately, please pray for God's perfect will for our lives~healing or not.
This really helped today...thanks Cara!
Isaiah 26:3-4
Just a reminder of how cool God is.....And how alive is Holy Words are in His Word.( Be prepared for goosebumps!)
As I was overwhelmed with great sorrow last night I opened my Bible up and looked straight down thru the tears to Isaiah 9:1. (NASB)
It read......But there will be no more gloom for her who is anguish....but later on He shall make it glorious.
WOW!!! How awesome is that..I will choose to believe God's words.
The new living translation reads....Nevertheless, that time of darkness and despair will not go on forever.
Thursday he just cried all day, he just wanted me to hold him. He required constant care. Having two other children that needed me as well and a household to run....It was more than I could handle alone...(Samuel ate a stale bag of famous amos cookies for breakfast!) I had to call for help! Blessed by amazing family! My sister in law came to get the other two kids and Josh's grandma came and cleaned and my aunt went to the grocery for us. Wow...what a day. Still seizing every minute, but not as long or as severe. Poor guy was just worn out. It was nice to just cuddle him and rest with him. We both needed it. He seemed to be very "drugged".
Friday started off pretty good...still seizing, but he was able to get down on the floor and play! That was nice to see. He was also able to participate in school too. That was a good feeling. He is so far behind, I love to see him have fun with our school work! However this did not last long. He had a tonic-clonic lasting three minutes during his nap. That makes two of "the big ones" this week. YUCK!! After that it was all down hill. He was back to what he was like when we took him to the ER on wednesday night. He was able to fall asleep and we are hopeful that if he gets some good sleep that he will be better in the morning. He has slept well. I know cause I have been up all night watching him! Nights like this are so hard to sleep! Honestly all I want to do is cry.
Those of you who know me, know that my "hope meter" is usually very high. I have to be honest with you all, tonight after watching Eli seize back to back again tonight, It is low. I don't question God...I know this is ultimately going to glorify Him and He will do amazing things through this (and already has). It is just so hard to see my sweet little 4 year old suffer. He is such a joy in our lives..I miss him so much! I know that the Lord can heal him and He will! It is getting really hard to be patient. I guess that is where the Lord wants me. It is hard to be so helpless. The scriptures say that when we are the weakest He is the strongest in our lives. THis is where faith comes in to believing. I can't see that right now, but I will choose to believe it because that is the truth and God's word is alive and active. I have to make a choice every day to believe in His words. If that is what he says then that is what He means. There is joy behind the overflowing tears, because I have faith in a Savior Jesus Christ that is much bigger than epilepsy. I recently received a card from a dear friend and she reminded me of my own words. "We are here on this earth to bring glory to God and the go home to heaven. The stuff we deal with here is all just piddly-dunk!"
It brings it back to the point that we are here on earth for such a short time and eternity is....well eternity and that is what we live for. Don't get me wrong...I am NOT suicidal.....but I can't wait for the Lord's return! I can't wait for our heavenly home. Where no illness or pain is present.
Josh was very wise this evening. He said that we get so use to "fixing" everything it is really hard when we absolutely have no control! When ALL is in God's hands. Come to think of it shouldn't that be where we are all at....letting him have complete control ( submitting ). What does complete submission look like?? Have I really submitted this! I feel like I have submitted it to Him....but on the other hand, if there was a healing for Eli laying on the floor I would grab it and use it without hesitation. I don't think that I would stop and ask the Lord if that is what He wanted or if it was OK...I would grab it. Maybe I need to rethink that one! Sorry, I am just typing "out loud".
Please pray for us...and thank you for the continued prayers! Please pray for my ability to completely submit this! Please pray protection over our marriage, please pray for safety and a hedge of protection over Eli. Please pray for Kylie and Samuel....they are a little stressed! Ultimately, please pray for God's perfect will for our lives~healing or not.
This really helped today...thanks Cara!
Isaiah 26:3-4
| You will keep in perfect peace all who trust in You, all whose thoughts are fixed on You! | ||||
|
Just a reminder of how cool God is.....And how alive is Holy Words are in His Word.( Be prepared for goosebumps!)
As I was overwhelmed with great sorrow last night I opened my Bible up and looked straight down thru the tears to Isaiah 9:1. (NASB)
It read......But there will be no more gloom for her who is anguish....but later on He shall make it glorious.
WOW!!! How awesome is that..I will choose to believe God's words.
The new living translation reads....Nevertheless, that time of darkness and despair will not go on forever.
I will choose to believe!!
Thank you Lord Jesus for being my ever-present help in times of trouble!!
I Love You Jesus!
Sunday, February 26, 2012
Seizure Free!
Just wanted to drop a quick note and let you all know that Eli has been completely seizure free for 24 Hours!!! Praise be to God in the highest! My heart sings with rejoicing! He is doing very well and Loving the freedom. God is Good He is so Good.
We started a new medication called Onfi two weeks ago. Either God is choosing to use it in Eli's life or this is the healing we have prayed for...or both! Doesn't really matter, just want God's will. And rejoicing in the season of no seizures.
We started a new medication called Onfi two weeks ago. Either God is choosing to use it in Eli's life or this is the healing we have prayed for...or both! Doesn't really matter, just want God's will. And rejoicing in the season of no seizures.
Friday, February 24, 2012
A Story About A Stroller
If you know me...you know that I am a researcher. Before I buy, I research everything about it. Also if you know me, you know that I can be a little on the impulsive side when it comes to buying that researched item. Well, I would like to share a little story about a stroller.
Back in September I realized the need for a new double stroller. The one that I had( an inline graco), I could no longer push with 70 pounds in it. By all means, most of the time when kids get that heavy they are able to walk and do not need a stroller. Due to Eli's seizures, he needs to be in a stroller. Especially on his bad days. And Samuel...well, being Samuel needs to be confined when we are out and about. He will find the prettiest gal around and convince her that he is cute enough to take home...and oh yes, would probably go. He is only two. Thus the need for still using a double stroller. Oh and if you know me, you know that I love strollers! I had a double jogging stroller that we would take to outside events...and that was a cinch to push. Only one problem, one huge problem, it wouldn't fit through most doorways or through the isles at the store. Pretty useless if you have to take the kids out of it, and fold it up to get it through the door. And not to mention after three years and many walks up and down our road(which was great!) it was not in the best of shape. Torn seat, wobbly wheel, and a continuously flat tire and one trip to the bike repair guy couldn't help all that. Although I have to say that it was a huge blessing in Colorado and at County Fair! It just wasn't an inside stroller and that is what I needed. I never would have imagined I would still need it by now. Eli's condition requires one....I am dreading the day where he has to be in a wheelchair or something. God willing he will be healed and we won't have to go there! But for now, the more "normal" things can be the better.
I do a lot with the kids by myself....nature of being a farmer's wife. And that is ok with me as long as I have the right equipment. I quickly realized I needed an all-terrain double stroller with pneumatic wheels and that could fit through a standard size door and fit a 4 year old comfortably. My search was on. I spent a whole afternoon researching strollers and I came to find a brand called Valco Baby. Huh, never heard of them. And there is was, the PERFECT stroller. Not only did it have everything I needed....It had room for three! And all this fit through a standard doorway. It was amazing. I watched it on youtube, read the parent reviews. There was not a bad word to be said about it. OK so this was it....oh wait, it was waaaay to expensive. I knew that it would NEVER fly with Josh....Never! He is usually really good at providing me with my mommy tools, but this price tag was ridiculous. I couldn't even bring myself to ask him. So I didn't, I clicked the "add to cart" button and let pay pal take the fall! I was so excited...I was gonna have what I needed ( or wanted). I waited for days for it to came and at this point trying to figure out how to make my case to Josh. In my heart I knew it was sin...and I should have never ordered it without Josh's approval. Especially since I knew he would say no! It arrived and I had to muster up the courage to ask God to forgive me and then ask Josh to forgive me. I told Josh that I was sending back and I knew I was wrong and he really didn't argue with me. I had already made the arrangements with the company to return it. They even paid for the return shipping! The UPS man came to get it and that was that...or so I thought.
I continued to tell Josh what a huge help it would be to me.....Bottom line was no. It was too much to pay for a stroller. I was sad, but sending it back felt good knowing that I was doing the right thing. My sweet husband was so merciful. I asked for it for Christmas and my birthday, but to no avail. I started looking for strollers that were cheaper, but they all were too wide. I figured at this point someone would have to give us one, like that would ever happen! I started praying that if it be God's will that I would somehow be able to get one, and if it wasn't His will that my heart would change. Two weeks ago I dusted off the old jogger. And thought how blessed I was to have it and I was determined to forget about the Valco Baby Tri Mode EX twin in Raven and be content with the stroller I had. I was gonna make it work! I stuck it in the car and had totally given up on the valco. God had said no!
Friday night I just had an urge to look on craigs list for a used one...maybe Josh would go for that! OK I guess I didn't totally give it up. The Chicago area was the closest to have a listing for this stroller. I replied to one add..he stated something about this stroller would be a "blessing". He was selling for half the price as new!! I thought just maybe Josh would go for it. I thought the seller might be a believer, but using blessing is not always an indication. I think that same night the seller emailed me back that he would call me the next day. As we talked I could tell that he was very honest...wanting to make sure that I knew what the stroller was like. I thanked him for his honesty (he was unaware that I had been researching if for 5 months!). His reply was that his honesty was a product of being a strong Christian family! Ah Ha...I thought so. Always nice to meet another brother or sister in Christ.
I told him a little about Eli and why we were interested in the stroller. They were so sweet. He basically said that my email had really touched his and his wife's heart and they wanted us to have the stroller and to let him know what we were able to do. So I called Josh and told him about it. If you know Josh you know he doesn't get too excited about this stuff. He gave me an allowance of how much I was able to give for it. As I emailed the seller back I felt horrible. I knew that the seller was really wanting us to be able to have it, however it was considerably less than what he was asking. I almost thought it was unfair. At this point I knew that it might not come to be. I think they really wanted us to have it, but I didn't want to shortchange them. I was totally OK with not getting it at this point. This time around I really wanted it to be God's will and nothing of me. I wasn't going to make it happen, i needed God to. I was so filled with joy! My heart was full and I was really OK with not getting it if it wasn't to be His will. I even saw joy in that. I just wanted to be in God's will. Being in His will is the best place to be. Out of His will is a lonely place to be.
So on Sunday morning, before church, Josh answers my cell phone and it is the seller! He talks and hangs up. I asked him who it was and he simply replied that it was Joe, he wants to give it to us! In disbelief, I said, "what"? Yeah, josh replied...they want to give it to us. My heart leapt for joy....but wait, I hope we didn't give them the impression that we couldn't afford it. We didn't want to take advantage of anyone. I called him back and basically he and his wife just wanted to give it to us as a gift, money aside! They had prayed about it and this is where the Lord had lead them. Their kindness and compassion overwhelms me still. Only God could do this! I felt so incredibly loved.
My heart was full of joy and renewed hope that went further than the stroller. Sometimes God says no, sometimes, he says yes and sometimes he says not yet. I had definitely thought the stroller was a no. And recently I have really thought Eli's healing was a no. But just like the stroller....Eli's healing is just a not yet! Praise be to God!! Who knew God would use this stroller situation for me to have a renewed hope.
It may sound silly, but this stroller has more meaning to me than anyone will ever know. Thank you to our new friends from Ill. Hope we all will meet again! I can't thank them enough for this amazing gift.
Disobedience leads to repentance, repentance leads to forgiveness, forgiveness leads to grace and mercy only a Father can give, this leads to communion with Christ and thru that is renewed hope!
Oh and by the way we took the stroller out for it's first ride today and it was amazing!!! It was everything that I thought it would be! Eli LOVES it! I couldn't get him out of it! I am one happy Mama!
I guess part of this lesson for me is don't let unresolved sin get in the way of communion with our LORD and savior Jesus Christ, seek forgiveness and truly repent, and let the love of Jesus wash over you!
I can't help but wonder what would have happened if I wouldn't have repented of my sin with Josh!
Praying that God will continually search me and show me where I need to repent!
Back in September I realized the need for a new double stroller. The one that I had( an inline graco), I could no longer push with 70 pounds in it. By all means, most of the time when kids get that heavy they are able to walk and do not need a stroller. Due to Eli's seizures, he needs to be in a stroller. Especially on his bad days. And Samuel...well, being Samuel needs to be confined when we are out and about. He will find the prettiest gal around and convince her that he is cute enough to take home...and oh yes, would probably go. He is only two. Thus the need for still using a double stroller. Oh and if you know me, you know that I love strollers! I had a double jogging stroller that we would take to outside events...and that was a cinch to push. Only one problem, one huge problem, it wouldn't fit through most doorways or through the isles at the store. Pretty useless if you have to take the kids out of it, and fold it up to get it through the door. And not to mention after three years and many walks up and down our road(which was great!) it was not in the best of shape. Torn seat, wobbly wheel, and a continuously flat tire and one trip to the bike repair guy couldn't help all that. Although I have to say that it was a huge blessing in Colorado and at County Fair! It just wasn't an inside stroller and that is what I needed. I never would have imagined I would still need it by now. Eli's condition requires one....I am dreading the day where he has to be in a wheelchair or something. God willing he will be healed and we won't have to go there! But for now, the more "normal" things can be the better.
I do a lot with the kids by myself....nature of being a farmer's wife. And that is ok with me as long as I have the right equipment. I quickly realized I needed an all-terrain double stroller with pneumatic wheels and that could fit through a standard size door and fit a 4 year old comfortably. My search was on. I spent a whole afternoon researching strollers and I came to find a brand called Valco Baby. Huh, never heard of them. And there is was, the PERFECT stroller. Not only did it have everything I needed....It had room for three! And all this fit through a standard doorway. It was amazing. I watched it on youtube, read the parent reviews. There was not a bad word to be said about it. OK so this was it....oh wait, it was waaaay to expensive. I knew that it would NEVER fly with Josh....Never! He is usually really good at providing me with my mommy tools, but this price tag was ridiculous. I couldn't even bring myself to ask him. So I didn't, I clicked the "add to cart" button and let pay pal take the fall! I was so excited...I was gonna have what I needed ( or wanted). I waited for days for it to came and at this point trying to figure out how to make my case to Josh. In my heart I knew it was sin...and I should have never ordered it without Josh's approval. Especially since I knew he would say no! It arrived and I had to muster up the courage to ask God to forgive me and then ask Josh to forgive me. I told Josh that I was sending back and I knew I was wrong and he really didn't argue with me. I had already made the arrangements with the company to return it. They even paid for the return shipping! The UPS man came to get it and that was that...or so I thought.
I continued to tell Josh what a huge help it would be to me.....Bottom line was no. It was too much to pay for a stroller. I was sad, but sending it back felt good knowing that I was doing the right thing. My sweet husband was so merciful. I asked for it for Christmas and my birthday, but to no avail. I started looking for strollers that were cheaper, but they all were too wide. I figured at this point someone would have to give us one, like that would ever happen! I started praying that if it be God's will that I would somehow be able to get one, and if it wasn't His will that my heart would change. Two weeks ago I dusted off the old jogger. And thought how blessed I was to have it and I was determined to forget about the Valco Baby Tri Mode EX twin in Raven and be content with the stroller I had. I was gonna make it work! I stuck it in the car and had totally given up on the valco. God had said no!
Friday night I just had an urge to look on craigs list for a used one...maybe Josh would go for that! OK I guess I didn't totally give it up. The Chicago area was the closest to have a listing for this stroller. I replied to one add..he stated something about this stroller would be a "blessing". He was selling for half the price as new!! I thought just maybe Josh would go for it. I thought the seller might be a believer, but using blessing is not always an indication. I think that same night the seller emailed me back that he would call me the next day. As we talked I could tell that he was very honest...wanting to make sure that I knew what the stroller was like. I thanked him for his honesty (he was unaware that I had been researching if for 5 months!). His reply was that his honesty was a product of being a strong Christian family! Ah Ha...I thought so. Always nice to meet another brother or sister in Christ.
I told him a little about Eli and why we were interested in the stroller. They were so sweet. He basically said that my email had really touched his and his wife's heart and they wanted us to have the stroller and to let him know what we were able to do. So I called Josh and told him about it. If you know Josh you know he doesn't get too excited about this stuff. He gave me an allowance of how much I was able to give for it. As I emailed the seller back I felt horrible. I knew that the seller was really wanting us to be able to have it, however it was considerably less than what he was asking. I almost thought it was unfair. At this point I knew that it might not come to be. I think they really wanted us to have it, but I didn't want to shortchange them. I was totally OK with not getting it at this point. This time around I really wanted it to be God's will and nothing of me. I wasn't going to make it happen, i needed God to. I was so filled with joy! My heart was full and I was really OK with not getting it if it wasn't to be His will. I even saw joy in that. I just wanted to be in God's will. Being in His will is the best place to be. Out of His will is a lonely place to be.
So on Sunday morning, before church, Josh answers my cell phone and it is the seller! He talks and hangs up. I asked him who it was and he simply replied that it was Joe, he wants to give it to us! In disbelief, I said, "what"? Yeah, josh replied...they want to give it to us. My heart leapt for joy....but wait, I hope we didn't give them the impression that we couldn't afford it. We didn't want to take advantage of anyone. I called him back and basically he and his wife just wanted to give it to us as a gift, money aside! They had prayed about it and this is where the Lord had lead them. Their kindness and compassion overwhelms me still. Only God could do this! I felt so incredibly loved.
My heart was full of joy and renewed hope that went further than the stroller. Sometimes God says no, sometimes, he says yes and sometimes he says not yet. I had definitely thought the stroller was a no. And recently I have really thought Eli's healing was a no. But just like the stroller....Eli's healing is just a not yet! Praise be to God!! Who knew God would use this stroller situation for me to have a renewed hope.
It may sound silly, but this stroller has more meaning to me than anyone will ever know. Thank you to our new friends from Ill. Hope we all will meet again! I can't thank them enough for this amazing gift.
Disobedience leads to repentance, repentance leads to forgiveness, forgiveness leads to grace and mercy only a Father can give, this leads to communion with Christ and thru that is renewed hope!
Oh and by the way we took the stroller out for it's first ride today and it was amazing!!! It was everything that I thought it would be! Eli LOVES it! I couldn't get him out of it! I am one happy Mama!
I guess part of this lesson for me is don't let unresolved sin get in the way of communion with our LORD and savior Jesus Christ, seek forgiveness and truly repent, and let the love of Jesus wash over you!
I can't help but wonder what would have happened if I wouldn't have repented of my sin with Josh!
Praying that God will continually search me and show me where I need to repent!
Thursday, February 23, 2012
Blessed to serve an awesome GOD!
This is a week that I can see God's hand is so evident in our lives. I am overjoyed to report that we had a 30 hour period of time that the LORD allowed Eli to be seizure free!!!!! We went from a seizure every minute to every ten minutes by lunchtime. After nap time he was seizure FREE!!! It was beautiful. God was amazing! We had our little boy back. Playing, laughing, crying, jumping, spinning....all that a 4 year old boy should be. The break in seizures was a welcome relief. It was so fun to see Eli and Samuel play like little brothers. Of course Kylie was rightly annoyed due to the increased pestering she endured. Even in that, there was joy. To GOD be the GLORY!!
The freedom from seizures was somewhat short-lived. By Wednesday night we were starting to see a few atypical absence seizures and slight myoclonic seizures. Today they have resumed seizure activity as normal, however they are not as frequent. He is having about ten an hour....very much a relief from the past two weeks. This evening seizures were few and far between. He is able to play more and have an altogether better quality of life! What an amazing GOD we serve...gracious and kind. Loving us all the way! What a gift he allowed us to have in those 30 or so hours. He (God) is teaching us so much and we are so thankful.
On another note, Samuel is getting really good at this potty thing! Yeah!! He is my comic relief.
Kylie is getting so big. She is so helpful and kind. God knew I would need her.
Wherever there is a hurt or a struggle God is in it and is looking favorably on those who abide in Him. Have you ever seen a rainbow while it is still raining? I have! It means that the rain will soon be over and the sun will shine again. Well, I see that sun shining. As much as I want this storm of life to end....I want it to be God's timing......cause in His timing everything is perfect and beautiful.
The freedom from seizures was somewhat short-lived. By Wednesday night we were starting to see a few atypical absence seizures and slight myoclonic seizures. Today they have resumed seizure activity as normal, however they are not as frequent. He is having about ten an hour....very much a relief from the past two weeks. This evening seizures were few and far between. He is able to play more and have an altogether better quality of life! What an amazing GOD we serve...gracious and kind. Loving us all the way! What a gift he allowed us to have in those 30 or so hours. He (God) is teaching us so much and we are so thankful.
On another note, Samuel is getting really good at this potty thing! Yeah!! He is my comic relief.
Kylie is getting so big. She is so helpful and kind. God knew I would need her.
Wherever there is a hurt or a struggle God is in it and is looking favorably on those who abide in Him. Have you ever seen a rainbow while it is still raining? I have! It means that the rain will soon be over and the sun will shine again. Well, I see that sun shining. As much as I want this storm of life to end....I want it to be God's timing......cause in His timing everything is perfect and beautiful.
Friday, February 17, 2012
Update Update!
WOW! I totally forgot about this blog. This would probably be a good time to update it, although few read it! I guess if I posted more frequently....there might be something to read. HaHa.
So much has happened this past year where do I even begin? OK I guess I will start with this..
~Eli's Journey~
On January 5th 2011 our lives would change forever! It was a typical Wednesday. My 3 year old nephew was here for the day. Kylie(4), Eli(3), and my nephew just had finished our home preschool program. Samuel(16 months) was down for his AM nap, thank the Lord! The kids and I went into the kitchen and I started to make lunch. The kids gathered and sat around the kitchen table. I gave each of the kids a hand full of pretzels to keep them busy. As I turned around to walk out of the kitchen to see if Samuel was up, I heard Eli roar like a bear. As I spun around, he continued to roar and started to climb up on the table. Very out of his character at this point. I started to walk towards him explaining that was not appropriate at the table. As I started to help him off the table and back into his chair, his arms flew up and back, his eyes rolled up, and he started to arch his back then he started to convulse....Oh and did I mention he had a bite of pretzel in his mouth. No amount of training will ever fully prepare you to see your own child in this state. Only by the grace of God I immediately recognized it as a seizure. Got him to the floor, turned him on his side to the recovery position, did a jaw hold and finger sweep to get the pretzel out, flung the pretzel across the room, grabbed the phone and called 911. Still seizing and gasping for air I told the 911 operator as calm as I could my address, name and that my 2 yo son (opps ...he had just turned 3) was having a seizure and to get someone here as quickly as possible. All the while my beautiful 4 year old little girl was screaming, "Mommy, Is he going to die!!!" " Oh Mommy what can we do!" All I could utter was, "Kylie I don't know honey, just pray." She is a little prayer warrior. She immediately started praying. My nephew just sat there with eyes as big as silver dollars. I am still not sure what he thought about it all. As time passed the convulsions stopped and he then was a limp rag in my arms. I was checking vitals and trying to get him to come to.....It wasn't working. I had seen seizures, but nothing like this. The post ictal state was unfamiliar to me. I kept thinking... did he stroke, what's going on. My prayer in that moment was Lord if you have to take him I know he is yours, but I love hime so much....please don't take him from me. Dear Lord help him, help me help him. Josh flew about 80 all the way home, I think my brother did too.
The ambulance came and we went to the hospital ER. They confirmed a seizure and we went home.
That was just the beginning! since then I will summarize the rest...
January 2011- about 5-7 tonic clonics, 2 ER visits, MRI's, CAT scans, and EEGs with no findings, and 1new great friend Kris (our EEG tech)
Febuary- More tonic clonics and the development of new seizures, Myoclonic Seizures...very short with brief vocalizations.
March- No more tonic clonics, myoclonic absence seizures started to present and more myoclonics and another ER visit and up to 60-200 seizures a day. The myoclonic drops started to appear as well. Just a slight head nod at this time.
April- Was the worst thus far. 100-300 seizures a day...1 every minute! could no longer talk, walk, and was the first time in a year and a half I had to put a diaper back on him! By easter our little Eli was gone. And we were wondering when this would all end.
May and June- where a little better as I recall. God allowed us a couple good days amount the bad.
24 hour EEG reveals like 600 seizure is 24 hour period. NUTS!! and we are asking OK Lord what do you want us to do next.
July and August- awe yes, vacation time, and here comes the monstrous myoclonic drops(looks like we are forcibly throwing him to the ground!) Results of which are bloody lips, goose eggs and a lot of boo boo's. Thus the first purchase of a helmet, curtosy of Uncle Oppie.
Septemper- Glory be to GOD!!! One completely seizure free month!! Absolute joy!
October thru Febuary- Continual worsening.
At this point we rejoice for a seizure free minute....just one minute and at this point his seizures are lasting longer and are taking more of a toll on him than ever.
Today Eli's head met the tile floor in the bathroom. Resulting in a huge, purple and blue goose egg. Just makes me sick!
You know at the end of the day, all i can say is that the LORD must be holding me up....I have no legs to stand on! He is my rock and shelter. He must be Strong cause I am so very weak!
I will continue to glorify the LORD.
I will leave you with this...my two readers.
The Lord had done great things for us and I will Praise the LORD!
So much has happened this past year where do I even begin? OK I guess I will start with this..
~Eli's Journey~
On January 5th 2011 our lives would change forever! It was a typical Wednesday. My 3 year old nephew was here for the day. Kylie(4), Eli(3), and my nephew just had finished our home preschool program. Samuel(16 months) was down for his AM nap, thank the Lord! The kids and I went into the kitchen and I started to make lunch. The kids gathered and sat around the kitchen table. I gave each of the kids a hand full of pretzels to keep them busy. As I turned around to walk out of the kitchen to see if Samuel was up, I heard Eli roar like a bear. As I spun around, he continued to roar and started to climb up on the table. Very out of his character at this point. I started to walk towards him explaining that was not appropriate at the table. As I started to help him off the table and back into his chair, his arms flew up and back, his eyes rolled up, and he started to arch his back then he started to convulse....Oh and did I mention he had a bite of pretzel in his mouth. No amount of training will ever fully prepare you to see your own child in this state. Only by the grace of God I immediately recognized it as a seizure. Got him to the floor, turned him on his side to the recovery position, did a jaw hold and finger sweep to get the pretzel out, flung the pretzel across the room, grabbed the phone and called 911. Still seizing and gasping for air I told the 911 operator as calm as I could my address, name and that my 2 yo son (opps ...he had just turned 3) was having a seizure and to get someone here as quickly as possible. All the while my beautiful 4 year old little girl was screaming, "Mommy, Is he going to die!!!" " Oh Mommy what can we do!" All I could utter was, "Kylie I don't know honey, just pray." She is a little prayer warrior. She immediately started praying. My nephew just sat there with eyes as big as silver dollars. I am still not sure what he thought about it all. As time passed the convulsions stopped and he then was a limp rag in my arms. I was checking vitals and trying to get him to come to.....It wasn't working. I had seen seizures, but nothing like this. The post ictal state was unfamiliar to me. I kept thinking... did he stroke, what's going on. My prayer in that moment was Lord if you have to take him I know he is yours, but I love hime so much....please don't take him from me. Dear Lord help him, help me help him. Josh flew about 80 all the way home, I think my brother did too.
The ambulance came and we went to the hospital ER. They confirmed a seizure and we went home.
That was just the beginning! since then I will summarize the rest...
January 2011- about 5-7 tonic clonics, 2 ER visits, MRI's, CAT scans, and EEGs with no findings, and 1new great friend Kris (our EEG tech)
Febuary- More tonic clonics and the development of new seizures, Myoclonic Seizures...very short with brief vocalizations.
March- No more tonic clonics, myoclonic absence seizures started to present and more myoclonics and another ER visit and up to 60-200 seizures a day. The myoclonic drops started to appear as well. Just a slight head nod at this time.
April- Was the worst thus far. 100-300 seizures a day...1 every minute! could no longer talk, walk, and was the first time in a year and a half I had to put a diaper back on him! By easter our little Eli was gone. And we were wondering when this would all end.
May and June- where a little better as I recall. God allowed us a couple good days amount the bad.
24 hour EEG reveals like 600 seizure is 24 hour period. NUTS!! and we are asking OK Lord what do you want us to do next.
July and August- awe yes, vacation time, and here comes the monstrous myoclonic drops(looks like we are forcibly throwing him to the ground!) Results of which are bloody lips, goose eggs and a lot of boo boo's. Thus the first purchase of a helmet, curtosy of Uncle Oppie.
Septemper- Glory be to GOD!!! One completely seizure free month!! Absolute joy!
October thru Febuary- Continual worsening.
At this point we rejoice for a seizure free minute....just one minute and at this point his seizures are lasting longer and are taking more of a toll on him than ever.
Today Eli's head met the tile floor in the bathroom. Resulting in a huge, purple and blue goose egg. Just makes me sick!
You know at the end of the day, all i can say is that the LORD must be holding me up....I have no legs to stand on! He is my rock and shelter. He must be Strong cause I am so very weak!
I will continue to glorify the LORD.
I will leave you with this...my two readers.
The Lord had done great things for us and I will Praise the LORD!
Thursday, October 28, 2010
Yeah....It has been awhile!
So yeah...it has been a little while since the last post. So many great and wonderful things have happened since my last post. And some very stressful times as well. We were very blessed this harvest season and were able to finish up about a month early...only cause we started a month early and totally God's hand. In the past months i have seen miracles.....real true miracles, I have weathered the season's of trial with joy and saddness and I continue to seek Christ's face. Thank you, Oh Lord, for being faithful even when we are not!
Just wanted to drop a note and let all know that I am still around. It has been busy busy busy. And somewhat sleepy with a one, two and three year old.
Blessed are the peacemakers!
Just wanted to drop a note and let all know that I am still around. It has been busy busy busy. And somewhat sleepy with a one, two and three year old.
Blessed are the peacemakers!
Thursday, February 18, 2010
Lunchtime Maddness
Will lunchtime ever be the same again....don't get me wrong, I love to spend time with the kids, but wow, what hard work!!! Getting it ready(while I have toddlers at my feet), getting to the table(without tripping over the toys at my feet), persuading them to eat it, keeping Eli from spilling his milk, or plate or whatever he can find to spill, keeping the food out of their hair, keeping it out of mine too, refillling milks, wiping up the messes and then comes cleaning them up and then back to the dishes....that is all I feel like I accomplish throughout the day is dishes, and I'm really not that great at that anyways! Good thing the baby is pretty easy going. That is a blessing. He is the easiest to feed at this point. I will be sad to see those days gone. All joking aside, this is a good day to be reminded of Job's suffering.....wow that would be a bad day. Always good to keep a little perspective. Come to think about it, someday I will miss all of this: the messes, the dishes, the little faces asking for more milkie! Something about that part of 1 Thesselonians 5:16 verse really hits home. "Rejoice always" So with that I rejoice in you oh Lord, for today you alone,oh God are my salvation my refuge and my strength; my help in times of trouble, I thank you oh Lord for your faithfulness!
He always has a way to keep our thoughts in perspective. Keep praying that God will give you His perspective!!
God is our refuge and strength, A very present help in trouble. Psalms 46:1
He always has a way to keep our thoughts in perspective. Keep praying that God will give you His perspective!!
God is our refuge and strength, A very present help in trouble. Psalms 46:1
Tuesday, February 16, 2010
Just a Little About Me
God has called me to start a blog! I am not sure why. I am a horrible speller (you will soon see), grammer was not my best subject, and I am a very slow typer!! Regardless I will be obedient and I will not ask questions. All this is for His glory. I will hopefully be able to share God's love for you and encourage you that we are all flawed, yet he loves use not because of who we are or what we do. He loves us because of who He is. I will hope to use this blog as a way to stay in touch with my family as well. I have three wonderful children ages 3 years old, 2 years old, and 5 months. And I have an AMAZING husband, who yes has flaws, but that guy loves Jesus and is an amazing leader of our home. I am so blessed. I pray that I don't sound like I am bragging. I do not deserve all this, yet I am blessed. I am humbled by all that I have recieved. I hope to share the stuggles and the joys of life in Christ!
James 1:17
Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.
I recently wrote out my testimony and feel that that this would be a good place to start. If you don't know me I hope this will help you to understand me and if you do know me you might learn something new.
James 1:17
Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.
I recently wrote out my testimony and feel that that this would be a good place to start. If you don't know me I hope this will help you to understand me and if you do know me you might learn something new.
Susanne's Testimony
2010
I have been so very blessed throughout the years. God has been so good. Over and over again I see His grace, mercy and loving kindness. Sure, I guess I could sit here and look at all the crumby things that have come my way, but what good would that be. No glory to the Lord, that is for sure. The trials that God has allowed in my life have helped to mold me and shape me into His image. My heart’s desire is to share with you what God has done in my life. I desire to be obedient to the Lord and honor Him in all that is shared. So with that, I will start at the beginning.
It was a cool fall day; I was born at 5:20 am. Born into a loving Godly home. For that I am grateful. This is the start of my journey with Christ. I realize this may sound silly, however having parents praying for you and your salvation right from the start can’t hurt! I believe from the moment I was born, God’s unconditional love for me was exemplified thru my parents. I feel that this was a curtail part of my childhood that helped prepare me for the battles of the flesh that would arise later in life.
I remember stopping at Carpenters Son (when it was behind the McDonalds on 26). I was four years old, and Mom let me stay in the car with my brother, while she ran in to pick up an order. There was a program on the radio. Chances are it was Moody or Focus on the family. It was a call for salvation. I just remember knowing that I wanted Jesus to live in my heart. Sitting on the middle fold out armrest in the front seat of our grey ‘86 Oldsmobile Cutlass Sierra, I stared at the radio (still believing that there were little people living in the radio, talking and singing for us). I just knew they were talking to me, and this was my chance to invite Jesus to live in my heart. I bowed my head and repeated the prayer with the guy “in” the radio. Even at four, I felt relieved and secure. Mom got back to the car, and I never said a word. I just knew that I felt different. I was excited; I had entered into my own relationship with Christ.
I am told by my mom that there were several times that I answered the alter call at concerts, church, and vacation bible school. I’m not sure why I was never told that I didn’t need to continually pray the prayer of salvation; however, it was always a desire of mine to know Christ. I had a child’s faith. I was on fire for the Lord and had a passion to share his love with others. Having been raised in a Godly home, I never had any doubts about God and never questioned it. My parents were not what I would call strict, but they always gave us an understanding of honoring Christ in our actions and choices. My parents could not have foreseen how that would affect us and how that would shape how we would react to the tragedy that was soon to be upon us.
One fall day, no different from any other, my dad jumped out of the tractor and twisted his leg the wrong way, or so we thought. After many days or weeks the pain would not go away. To make a long story short, my dad was diagnosed with cancer in his hip in November of 1994. By the following month, it had spread to his lungs and femur. He started Chemotherapy by the first of January, and we were praying for a healing. He spent much of January in the hospital, and on January 31st he received the ultimate healing and went to be home with his Lord and Savior, Jesus Christ. He was just 39 years old and left a wife of 18 years, a 12 year old daughter (me), and a 15 year old son behind.
This was the very first time I was amidst tragedy. Never once, through this whole ordeal, did I hear my Dad ask the “why me” questions. Mom and Dad explained it as though it were just another chapter in the book that God had written for us. He was an amazing example to me of our Heavenly Father and the love that Christ had for me. He was an incredible witness to those around him, especially in his final days here on earth. I knew God’s love for me was real and that He would provide. I was devastated and heartbroken that God would take such a great man away from his family.
I believe because my parents were open and continually shared God’s heart and character with me, I was able to see God’s hand in all that transpired. Mom and Dad always shared what God was doing in our lives and gave Him the glory. Mind you, they were not always perfect parents, but God’s love triumphed. It was a time of great sorrow, grief, and desperation. Many nights I cried myself to sleep and could hear my mother doing the same. At times I felt anger and other times I was too grieved to even be angry. I have to say I never doubted God’s love for me and never felt forsaken. In fact my relationship with Christ grew. I feel this is due to the decision that my parents made years earlier to honor God in their parenting and to teach us to honor God in our actions and choices. I had a choice to honor God and draw near to Him or be angry, resentful, and let bitterness take hold. I knew God loved, and my parents had always exemplified that love. So, I chose to honor Him. I had to look at it like this: Some kids never have a good dad; God blessed me with 12 years with an amazing, yet flawed, Godly dad, who loved me. That is more than some get, and I am thankful for that.
The following years were difficult for us all. As I grew up, God was indeed faithful to provide for all our needs and some desires along the way. In this time of desperation, God had given me a vision of a little brother or sister. He or she was about 3 or 4 years old. God also accompanied that vision with a date. The date I cannot recall, however, my mom has it in one of her many journals. Mom even bought a pair of baby shoes for us to remind us of God’s promises. I had no idea what would later become of that. God also gave my mom a promise and a vision. I watched in those years as she remained faithful and steadfast in the Word and maintained a trust that God would restore our joy greater than the sorrow we had known.
My late high school years and early college ones seemed to bring with them the biggest battles of the flesh. I started speaking out loudly for the Lord, and sometime around my sophomore year I began to lose friends, and friends started to change. It was a very lonely time. I can remember sitting in Sophomore English class, battling my own thoughts. I just kept thinking no one likes me, and I must not be worth anything. After all, no one wanted to be my friend anymore. God was quick to remind me that He was my best friend, and I needed only Him. It was comforting at the time, and it held the tears back. Unfortunately, my flesh and the desire to fit in started to take me captive. The battle had begun.
Slowly I started to adapt to the world, and in my desperate attempt to fit in, I started to compromise my values. It was a slippery slope. I started saying things that I would have never thought I was even capable of saying and started hanging out with the wrong crowd, dating guys that I shouldn’t have, and wearing clothes that my mom would never have approved of.
You can pretty much sum it up as rebellion. I wouldn’t say complete rebellion. I would continue to cry out to the Lord, and I stayed active in church and kept repenting. There were seasons – seasons of rebellion and seasons of faith and fellowship with the Lord. The only way I can explain it is like this: It was like there was a bungee cord between me and the Lord (possibly my mom’s prayers). He would let me wonder out a ways, and as I wondered out a little too far, He would pull me back in. God blesses us, not because of what we do, but because of who He is. What a relief.
By my mid junior year those seasons of fellowship grew shorter and shorter. I was starting to become very depressed, and I felt like it was even starting to affect me physically. My back was hurting so badly I was frightened that I too had cancer. I started to distance myself from my friends and family, and what do you know? God blessed me anyways. He brought Josh into my life. We started dating December 10, 1999 and by that Christmas the pain in my back was gone! God is awesome! My “depression” started to lift, and my seasons of fellowship with God seemed to be longer. Josh and I sure had our seasons of rebellion, but once again they were followed by repentance and fellowship with the Lord. This is the way it was all through high school and college.
Looking back I can see that I was riding on the coattails of my mom and dad’s relationship with Christ during those years. As strange as it may sound, I was simply living the way I had been taught. Don’t get me wrong. I saw God’s hand in all that happened in my life and loved the Lord deeply. However, I had reached a point where my own faith was no longer growing. I had not experienced the “wow” moment in my own walk with the Lord – the kind of moment that gives you the power to not fall back in to fleshly desires. It would be years later that I would discover my own need for a mature relationship with Christ.
Mom’s vision and promise came to fruition when she met Gerritt in September 2001, and they were married by that March. With the fulfillment of mom’s vision and promise, came the fulfillment of mine as well. With Gerritt came Lilyana, my new 4 year old little sister. Oh, how faithful God was! The date God had given me years before ended up being the day Lily was adopted by Gerritt and Sara, his first wife who had also went to be with the Lord. I couldn’t doubt the power of our Lord and Savior Jesus Christ!
It was difficult to accept Gerritt as a parent at first, but as I grew closer to the Lord, I realized he was a blessing from God, and I needed to respect him as a parent. Our relationship started to grow after that. After all, I always say that if I could have handpicked a second dad, I couldn’t have done any better. I really don’t like to refer to him as my step-dad, because God brought him in as a second dad not a “step” down. I have been so very blessed to have not just 1 great dad; I have been blessed with 2 amazing dads. Not many can say that!
Josh and I had our rough patches, but managed to maintain a faithful love for one another. He graduated from college in 2002 and I in 2005. We were married that summer, and God really started to pull on my heart. I knew we needed to get back into church. We were starving and struggling to find a church home.
At this time, I had started working at Home Hospital in the rehab department. I had worked there on and off in college, but now was there full time. There was one therapist there in particular that totally had a fire for Christ. I could tell that his relationship with Christ was for real. He was bold and confident in Christ. I knew I wanted that too. That is when I realized that I could no longer survive on the “coattails.” I needed to dig in and pursue that deep, mature relationship with Christ. It wasn’t hard to get my co-worker to share about his church family, and he soon invited us to Harvest Chapel. I was so excited. I wanted to sit under that teaching. That was my WOW moment.
I remember thinking that I wanted to be fed with whatever food my co-worker had been fed. I went home and talked Josh into visiting Harvest. Josh finally agreed. It took considerable persuasion considering he thought I was taking him to the House of Prayer there on the corner by the coffee shop. You should have seen the relief on his face when he realized it was not.
Our first Sunday, Pastor Tom was in the book of Acts, teaching on the first church. What a cool way to find a church. We walked out feeling not just fed, but like we had just been to a feast! Finally, we were home. We continued to come to Harvest, and God continued a work in our hearts. Realizing He wanted so much more for us, I totally surrendered and finally started to work on my very own real relationship with a living God! No more coattails needed. The bondage of desires and temptations of the world that once held us back from true fellowship with the Lord Jesus Christ, were broken through repentance and forgiveness. It was the start of a very real, love relationship with Jesus Christ that continues to grow.
Proverbs 22: 6
Train up a child in the way he should go, even when he is old he will not depart from it.
Thank you for reading....more to come soon!
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