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.
Sunday, February 26, 2012
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!
Subscribe to:
Posts (Atom)