2hearts archive
Close WindowKaston
Read Jamie's October '04 post and see what God is doing
for him and His family.
It’s
been a while since we last posted and I’ve been working on this one
for weeks. I only have a few minutes at a time to write.
Just wanted to give a reflection of this past month. We have so many people to thank for the support, both emotionally & financially, while we have had the hardships associated with having a child go thru surgery. So many people have prayed on our’s & Kaston’s behalf and we can only give a very heartfelt “thank-you”. Be sure that God has answered so many of your prayers and it is our request that you share Kaston’s story and testimony to others, to let people know (especially the heart families) that there is hope out there, if you allow God to be involved in the process of healing.
I cannot begin to tell you how important the nurses and doctors involved in Kaston’s care have been to our family. Here at home, we have an extended family of doctors and nurses that take care of Kaston. They treat him as one of their own and love on him and give him the best of what they have to offer. We have such a privilege of having these top notch medical professionals taking care of our baby boy. I can’t say enough good things about Dr. Young and his staff and Dr. Luckstead and his staff. If you are beginning this journey into the CHD world, make sure you have a medical team that you can communicate with openly and feel as if they are a part of your family. It makes a whole difference in your newfound world.
As far as the folks in Dallas are concerned, again just the best. We couldn’t have had a better team working for Kaston. And that’s what they truly are, is a team. They work together for the benefit of each individual child; not to see how much money they can make or how much stature they can gain from their accomplishments. They’re kinda like cops, fireman, and teachers; under paid and under appreciated. Again, I just can’t say enough good things about everyone involved in his care at Children’s, but anyone whose had the unfortunate opportunity to be there will agree how wonderful the cardiology folks are there. I bet there was more than 200 people that cared for Kaston (that actually touched him physically) and I can say that each and every one treated him like an actual person, not simply a sick kid on a machine or hooked up to something. They just all have so much compassion for these kids; it’s just amazing how much care they can have for someone that they’ll probably never see again. I sure hope we never have to see another hospital, but if we do, I only pray that it will be Children’s, because they have completely spoiled us. It’s not like going to your local hospital. It’s so hard to describe the atmosphere there that you can’t really understand it unless you’ve been there, done that. I could go on and on. I’ll just say that everyone involved in Kaston’s care has been such a joy and blessing in our lives and we can only praise God that we have had the opportunity to experience first hand God’s miracles, grace and love though each of these individuals.
Throughout this process of becoming a part of Congenital Heart Defects (CHD) world, we have found renewed strength through God and are trying to figure out what He will have us do to give Him thanks for sparing our little boy's life. When we were told that he had a "heart defect", we were simply handed an AHA book with a page earmarked of a description and drawing of the defect. Kaston's doctors are absolutely wonderful doctors, but it's up to the parents to be advocates for their kids and to get information out there to other families about CHD. We have spent hundreds of hours on the internet searching and researching everything we could find for CHD. There are many support groups around the world to provide information and support to families and we belong to several of those that have helped us out in a tremendous way.
However, we believe that God has placed it in our heart's to begin some sort of CHD awareness campaign in our area. There's a definite need for more awareness and resources in the Panhandle and we thought it appropriate to name our project “Kaston‘s Lane“, providing a lane of resources and information for CHD. I’m currently working with an artist from Colorado that is going to help me come up with some sort of logo. Basically we will begin this project with a simple binder with information I’ve gathered throughout the last 2 years pertaining to CHD. Something I can handle from my personal computer and distribute with minimal cost to our family. It will also include information packets from other support groups. Heart to Heart has donated some packets to help us get started. Maybe some day it will grow into a non-profit program and eventually have group meetings and distribute even further from the Panhandle. But you gotta start somewhere and I think this is the perfect way to go. Both of Kaston’s doctors have supported this idea and said that they would help get the info out there and are grateful that someone is taking the initiative to supply more information in our area. Since we’ve been back, we’ve come across two more families in Amarillo that are wanting more information and have contacted us directly. So, it’s kinda just been more confirmation that this is what we need to do.
As far as normal life, we’re getting there. Kaston is still sleeping about 14 hours a day, but he’s doing so good. His energy level is increasing and I think his body is finally adjusting to his new cow plumbing! Psychologically, he’s doing great. He’s only had a couple of nightmares and his attitude and tempers have improved. He was really irritable before his surgery, understandably; he must have felt really awful because he was such a grouch all the time. But now he’s just the happiest little boy. He still loves tractors and boats and right now he’s on a Finding Nemo kick. He still loves Bob the Builder but “Me-Mo” usually prevails!
His infection is gone and has had no problems since. He goes back to Dr. Young on his birthday and Dr. Luckstead in December. He’s hoping to start weaning him off some of his meds at that point. He starts the synagis vaccination (for RSV) hopefully by the end of the month (it takes a while to get everything approved as it is around $1,600 per vaccination - each month! Our part is $45.00) and he’ll get that monthly until April. And he’s already had his flu shot. He looks very good and his wounds are healing very good and clean. His chest tube scars are pretty thick and purple, but I know that will fade in time. He runs his hand across his chest a lot, which I’ve heard is very normal. I guess it’s pretty sensitive for a while. He still turns blue at times (not near what it was), but his hands and feet generally stay warm - a very big change.
We’re still trying to keep him at minimal contact, but it’s hard to not want to take him places with us. He’s gone out to eat with us a couple of times and we’ve taken him to the grocery and to the mall (during the middle of the week, mid-day). But for the most part, I think it’s best that he stay out of the general public as much as possible for this winter, especially high traffic areas where kids are, like church nursery, Chuck E Cheese, etc. We’re hoping that by next fall, we’ll be able to enroll him in some kind of pre-school program, like Korah went to. We’ll just have to see!
Speaking of Korah, she’s doing really good too. She still hates soccer and doesn’t want to play any more, but we told her she has to finish the season. She is so funny out on the field! She is usually talking to the other kids, or watching the game next to her, or watching the cheerleaders or blowing me kisses! She’s quite the character. She even laid down on the field at one time and was sitting on her knees while she was the goalie! It took everything I had not to yell at her from the sidelines! But it did give us something to laugh about! She loves gymnastics, but wants to do tap next time. And she is also wanting to do Girl Scouts and cheerleading. It’s amazing all there is to do for a 5 year old! So we’ll have to see what she wants to do most and pick 2! She’s quite the socialite and drama queen, which she kinda always has been anyway. She loves going to the mall and shoe shopping! I’ve created a monster!
Anyways, sorry for the long post. There’s just a lot that I wanted to say and haven’t had the time to do it. So, hope everyone is doing well and having a great autumn. Last but not least…
“GrandPenny’s Sermon” is something that a grandmother wrote on her grandson’s carepage. Her message really touched what I’ve been wanting to say for a long time but just didn’t know how to relay it. It’s amazing how God puts people in your life to help you out. Even with the small stuff. I asked her permission to post it here. Her grandson’s name is Corbin and he’s been in the hospital for a very long time and is a very sick little baby. You can read more about him on his carepage at: corbingrabb. I have replaced Corbin’s name with Kaston’s.
GRANDPENNY’S SERMON
God's mercy and goodness last forever!
I would not trade Kaston for anyone or anything in God's universe. EVERY child is a gift from God, nothing and no one's life is guaranteed, and Our God is good ALL the time. I would not trade one moment of Kaston’s life for any personal comfort, less "hassle", less work, convenience or "normal" life for myself nor my family. Yes, we want Kaston to be healed and to live a very long and full life. Yes, it's VERY hard to also watch our family suffer with a sick child, But God knows exactly what Kaston needs and exactly what is best for us, despite how little we deserve. His good gifts, His mercies and grace overflow in our lives and we thank Him for every minute of Kaston’s life. Kaston’s life has had more impact on more people (approaching thousands now, all around the world) in 2 years than many well-meaning people have made in a lifetime. A day to God's glory far surpasses a lifetime to selfish pleasures. Please understand my desire to clarify why we do everything we can for Kaston, appreciate each moment that God gives us, for we have been chosen for such a time as this and are committed to the precious lives God has entrusted to us. This is our trial -- no one gets to choose their trials. We praise God for his refining work in our lives and for blessing us with our precious Kaston, through whom we see God's face so much clearer. I praise God for every one of our family members and every other precious life He's entrusted to our care. Our children are only on loan to us -- they belong to God -- and they are ALL perfect in His eyes. We thank God for your prayers for Kaston. Please also pray for the lost souls who are grieving without hope, judging without love, missing the important aspects of this life because they do not know our Savior. We pray that all of you will know God's perfect peace and desire to serve Him, even when it's not pleasant or convenient.
Just wanted to give a reflection of this past month. We have so many people to thank for the support, both emotionally & financially, while we have had the hardships associated with having a child go thru surgery. So many people have prayed on our’s & Kaston’s behalf and we can only give a very heartfelt “thank-you”. Be sure that God has answered so many of your prayers and it is our request that you share Kaston’s story and testimony to others, to let people know (especially the heart families) that there is hope out there, if you allow God to be involved in the process of healing.
I cannot begin to tell you how important the nurses and doctors involved in Kaston’s care have been to our family. Here at home, we have an extended family of doctors and nurses that take care of Kaston. They treat him as one of their own and love on him and give him the best of what they have to offer. We have such a privilege of having these top notch medical professionals taking care of our baby boy. I can’t say enough good things about Dr. Young and his staff and Dr. Luckstead and his staff. If you are beginning this journey into the CHD world, make sure you have a medical team that you can communicate with openly and feel as if they are a part of your family. It makes a whole difference in your newfound world.
As far as the folks in Dallas are concerned, again just the best. We couldn’t have had a better team working for Kaston. And that’s what they truly are, is a team. They work together for the benefit of each individual child; not to see how much money they can make or how much stature they can gain from their accomplishments. They’re kinda like cops, fireman, and teachers; under paid and under appreciated. Again, I just can’t say enough good things about everyone involved in his care at Children’s, but anyone whose had the unfortunate opportunity to be there will agree how wonderful the cardiology folks are there. I bet there was more than 200 people that cared for Kaston (that actually touched him physically) and I can say that each and every one treated him like an actual person, not simply a sick kid on a machine or hooked up to something. They just all have so much compassion for these kids; it’s just amazing how much care they can have for someone that they’ll probably never see again. I sure hope we never have to see another hospital, but if we do, I only pray that it will be Children’s, because they have completely spoiled us. It’s not like going to your local hospital. It’s so hard to describe the atmosphere there that you can’t really understand it unless you’ve been there, done that. I could go on and on. I’ll just say that everyone involved in Kaston’s care has been such a joy and blessing in our lives and we can only praise God that we have had the opportunity to experience first hand God’s miracles, grace and love though each of these individuals.
Throughout this process of becoming a part of Congenital Heart Defects (CHD) world, we have found renewed strength through God and are trying to figure out what He will have us do to give Him thanks for sparing our little boy's life. When we were told that he had a "heart defect", we were simply handed an AHA book with a page earmarked of a description and drawing of the defect. Kaston's doctors are absolutely wonderful doctors, but it's up to the parents to be advocates for their kids and to get information out there to other families about CHD. We have spent hundreds of hours on the internet searching and researching everything we could find for CHD. There are many support groups around the world to provide information and support to families and we belong to several of those that have helped us out in a tremendous way.
However, we believe that God has placed it in our heart's to begin some sort of CHD awareness campaign in our area. There's a definite need for more awareness and resources in the Panhandle and we thought it appropriate to name our project “Kaston‘s Lane“, providing a lane of resources and information for CHD. I’m currently working with an artist from Colorado that is going to help me come up with some sort of logo. Basically we will begin this project with a simple binder with information I’ve gathered throughout the last 2 years pertaining to CHD. Something I can handle from my personal computer and distribute with minimal cost to our family. It will also include information packets from other support groups. Heart to Heart has donated some packets to help us get started. Maybe some day it will grow into a non-profit program and eventually have group meetings and distribute even further from the Panhandle. But you gotta start somewhere and I think this is the perfect way to go. Both of Kaston’s doctors have supported this idea and said that they would help get the info out there and are grateful that someone is taking the initiative to supply more information in our area. Since we’ve been back, we’ve come across two more families in Amarillo that are wanting more information and have contacted us directly. So, it’s kinda just been more confirmation that this is what we need to do.
As far as normal life, we’re getting there. Kaston is still sleeping about 14 hours a day, but he’s doing so good. His energy level is increasing and I think his body is finally adjusting to his new cow plumbing! Psychologically, he’s doing great. He’s only had a couple of nightmares and his attitude and tempers have improved. He was really irritable before his surgery, understandably; he must have felt really awful because he was such a grouch all the time. But now he’s just the happiest little boy. He still loves tractors and boats and right now he’s on a Finding Nemo kick. He still loves Bob the Builder but “Me-Mo” usually prevails!
His infection is gone and has had no problems since. He goes back to Dr. Young on his birthday and Dr. Luckstead in December. He’s hoping to start weaning him off some of his meds at that point. He starts the synagis vaccination (for RSV) hopefully by the end of the month (it takes a while to get everything approved as it is around $1,600 per vaccination - each month! Our part is $45.00) and he’ll get that monthly until April. And he’s already had his flu shot. He looks very good and his wounds are healing very good and clean. His chest tube scars are pretty thick and purple, but I know that will fade in time. He runs his hand across his chest a lot, which I’ve heard is very normal. I guess it’s pretty sensitive for a while. He still turns blue at times (not near what it was), but his hands and feet generally stay warm - a very big change.
We’re still trying to keep him at minimal contact, but it’s hard to not want to take him places with us. He’s gone out to eat with us a couple of times and we’ve taken him to the grocery and to the mall (during the middle of the week, mid-day). But for the most part, I think it’s best that he stay out of the general public as much as possible for this winter, especially high traffic areas where kids are, like church nursery, Chuck E Cheese, etc. We’re hoping that by next fall, we’ll be able to enroll him in some kind of pre-school program, like Korah went to. We’ll just have to see!
Speaking of Korah, she’s doing really good too. She still hates soccer and doesn’t want to play any more, but we told her she has to finish the season. She is so funny out on the field! She is usually talking to the other kids, or watching the game next to her, or watching the cheerleaders or blowing me kisses! She’s quite the character. She even laid down on the field at one time and was sitting on her knees while she was the goalie! It took everything I had not to yell at her from the sidelines! But it did give us something to laugh about! She loves gymnastics, but wants to do tap next time. And she is also wanting to do Girl Scouts and cheerleading. It’s amazing all there is to do for a 5 year old! So we’ll have to see what she wants to do most and pick 2! She’s quite the socialite and drama queen, which she kinda always has been anyway. She loves going to the mall and shoe shopping! I’ve created a monster!
Anyways, sorry for the long post. There’s just a lot that I wanted to say and haven’t had the time to do it. So, hope everyone is doing well and having a great autumn. Last but not least…
“GrandPenny’s Sermon” is something that a grandmother wrote on her grandson’s carepage. Her message really touched what I’ve been wanting to say for a long time but just didn’t know how to relay it. It’s amazing how God puts people in your life to help you out. Even with the small stuff. I asked her permission to post it here. Her grandson’s name is Corbin and he’s been in the hospital for a very long time and is a very sick little baby. You can read more about him on his carepage at: corbingrabb. I have replaced Corbin’s name with Kaston’s.
GRANDPENNY’S SERMON
God's mercy and goodness last forever!
I would not trade Kaston for anyone or anything in God's universe. EVERY child is a gift from God, nothing and no one's life is guaranteed, and Our God is good ALL the time. I would not trade one moment of Kaston’s life for any personal comfort, less "hassle", less work, convenience or "normal" life for myself nor my family. Yes, we want Kaston to be healed and to live a very long and full life. Yes, it's VERY hard to also watch our family suffer with a sick child, But God knows exactly what Kaston needs and exactly what is best for us, despite how little we deserve. His good gifts, His mercies and grace overflow in our lives and we thank Him for every minute of Kaston’s life. Kaston’s life has had more impact on more people (approaching thousands now, all around the world) in 2 years than many well-meaning people have made in a lifetime. A day to God's glory far surpasses a lifetime to selfish pleasures. Please understand my desire to clarify why we do everything we can for Kaston, appreciate each moment that God gives us, for we have been chosen for such a time as this and are committed to the precious lives God has entrusted to us. This is our trial -- no one gets to choose their trials. We praise God for his refining work in our lives and for blessing us with our precious Kaston, through whom we see God's face so much clearer. I praise God for every one of our family members and every other precious life He's entrusted to our care. Our children are only on loan to us -- they belong to God -- and they are ALL perfect in His eyes. We thank God for your prayers for Kaston. Please also pray for the lost souls who are grieving without hope, judging without love, missing the important aspects of this life because they do not know our Savior. We pray that all of you will know God's perfect peace and desire to serve Him, even when it's not pleasant or convenient.
Take
care and God Bless!
The Snyder’s
Bob, Jamie, Korah & Kaston
The Snyder’s
Bob, Jamie, Korah & Kaston