Today I had plenty of time to talk to God while I shoveled the 6-8 inches of snow that fell last night. Per a phone conversation I had earlier this morning, I realized that I put limitations on God's healing. Let me clarify, I know God heals! He heals broke arms, broke hearts, broke minds. But when it comes to genetic conditions aka family curses. I have never went their with God, what is, is...right??
NO!!
I am going to give God back his power, stop putting limitations on his love and miracles. I hear people talk about healing but they don't give God the credit for it. I hear alcoholics say they have gone 30years since their last drink. People that had cancer will tell you they are in remission. Moms will tell you they have a child with high functional autism or down syndrome. What we should hear is alcoholics say it has been 30 years since the Lord healed them. Cancer patients tell you about the months or weeks they have been healed! Moms saying that they go to the doctor because it is protocol, but the only doctor they ever needed was God. I say that because I know doctors have to cover theme self.
I had always thought about generational curses being, untimely deaths and such. But my God is bigger than that. After all he knit me together, and before he did, he knew all my hopes and dreams, all my aches and pains. So for me, I will no longer put limitations on God's healing!
Friday, February 25, 2011
Wednesday, February 23, 2011
Praise Report!
Last week, ChloeJace, George and I went 2.5 hours away to go to the Neurosurgeon (Dr. Roger Hudgins previously of Children's Health care of Atlanta. We were up early, before the chickens early. We had to be there by 9am that was then pushed back to 10am and at 10am they where running behind. (see early blog, I knew it!)
Akron Children's was great! Big, Bright, Cheerful, and a friendly face to point you on your way. For some reason MRI is always in the basement (just a note). So we check in and wait. I love thatwe ChloeJace had an advocate there to walk her through the process, although I think she could take the woman's job it is great to have a Go-to person. This is a different feeling then the nurse that wrights her name on the board, and you have to press a button and wait for someone to say " Your nurse will be down soon."
This is George's 4 MRI with his sister. Once in the belly, once just a few months old, once around 2 and now. It has gotten a lot easier for him. He had to look away when she got her IV, in fact the nurse asked if he was going to be ok, MEN!
ChloeJ didn't miss a beat. She was a trooper! Right after the MRI, we made the trip to the 6th floor to the neurosuroens office. We were seen in just a few minuets. Dr. Hudgins came into the room like he had just seen ChloeJ. It is a good feeling when you don't have to remind your doctor who you are, even if at had been 4 years. He even warmed up to George, who in true George style, told him he had a headache. I guess I should just buy Dr. Hudgins a new home and be done with it.
The MRI was clear, perfect. He doesn't want to see us for 2 more years! That is great, that is how long it will take to pay him off, even with insurance. I also made sure to ask that since we made it past the 7 year mark, what our chances are. The tumor she had has a 70% chance of returning in the fist 7 years. The doctor told us slim, that means less the 70% and 70% is the world considering that the oncologist gave us a 100% chance of cancer, which it wasn't. I will walk by faith as I did before, and know that whatever happens is in God's hands. The chance of your child having a brain tumor is less then your shot at winning the lottery. Look for updates in 2 years.
Blessings!
Akron Children's was great! Big, Bright, Cheerful, and a friendly face to point you on your way. For some reason MRI is always in the basement (just a note). So we check in and wait. I love that
This is George's 4 MRI with his sister. Once in the belly, once just a few months old, once around 2 and now. It has gotten a lot easier for him. He had to look away when she got her IV, in fact the nurse asked if he was going to be ok, MEN!
ChloeJ didn't miss a beat. She was a trooper! Right after the MRI, we made the trip to the 6th floor to the neurosuroens office. We were seen in just a few minuets. Dr. Hudgins came into the room like he had just seen ChloeJ. It is a good feeling when you don't have to remind your doctor who you are, even if at had been 4 years. He even warmed up to George, who in true George style, told him he had a headache. I guess I should just buy Dr. Hudgins a new home and be done with it.
The MRI was clear, perfect. He doesn't want to see us for 2 more years! That is great, that is how long it will take to pay him off, even with insurance. I also made sure to ask that since we made it past the 7 year mark, what our chances are. The tumor she had has a 70% chance of returning in the fist 7 years. The doctor told us slim, that means less the 70% and 70% is the world considering that the oncologist gave us a 100% chance of cancer, which it wasn't. I will walk by faith as I did before, and know that whatever happens is in God's hands. The chance of your child having a brain tumor is less then your shot at winning the lottery. Look for updates in 2 years.
Blessings!
Monday, February 14, 2011
My Valentine.
When you have as many medical bills as we do, you learn to love when every one is healthy. ChloeJace will be back at another Children's hospital this week. Wednesday she goes to the pediatric neurosurgeon. She will have her regular MRI. This is done to ensure that the brain tumor is not coming back. We used to have to get this done every six months, then every year. It will be about a 2 hour drive to Akron, OH. We have the MRI at 9:15am. It takes about 30 -45 mins. of preparation, then an hour in the machine. Followed by another 45 mins. of recovery. After that we will see the doctor that will be around 1pm. You know how it is you never get in and out on schedule.
Then in 2 more weeks ChloeJace will be at The Cleveland Clinic. This is another children's hospital, this one is in Cleveland, OH, another 2-3 hours away. At The Cleveland Clinic she will see her pediatric electrophysiology. This is her heart doctor. We will get there and she will have an EKG done, then we will see the doctor. This one is a bit more easy, they just ask a lot of questions. Then we get our prescription for 6 more months of beta blockers, and if anything needs to be done, that means that ChloeJace will have to wear a monitor for a period of time then send it back. She has wore an event monitor 2 times and, this monitor is on for about a month. ChloeJace has also wore a holter monitor, this monitor is wore for 24 hours. I think she has wore this kind of monitor 4 times.
As you can imagine one condition is made a little hard to treat because of the other, then you throw in the allergies and asthma, and we have several long days a year. My favorite part, is that it is our time. The car rides and the waiting to be seen by the doctor gives us lots of time to be mommy and daughter. Everyday life is so busy, it gets harder to stop and just talk about nothing, or everything together. I can think of a million ways to spend a day or two with ChloeJace, and it doesn't include going to or from a hospital. You see, these are my Valentines days and if you were to ask ChloeJace she would say the same. If your Valentines day is February 14 or, or the Sunday afternoon when everything is calm and quite, enjoy it and embrace the time you have. It doesn't have to include gifts, or going out, it is what you make it.
Brian and I do not go out we do not exchange gifts on Valentines day, we know that our love can be celebrated any day. ChloeJace and I already have to special dates coming up, and for that I am thankful.
Then in 2 more weeks ChloeJace will be at The Cleveland Clinic. This is another children's hospital, this one is in Cleveland, OH, another 2-3 hours away. At The Cleveland Clinic she will see her pediatric electrophysiology. This is her heart doctor. We will get there and she will have an EKG done, then we will see the doctor. This one is a bit more easy, they just ask a lot of questions. Then we get our prescription for 6 more months of beta blockers, and if anything needs to be done, that means that ChloeJace will have to wear a monitor for a period of time then send it back. She has wore an event monitor 2 times and, this monitor is on for about a month. ChloeJace has also wore a holter monitor, this monitor is wore for 24 hours. I think she has wore this kind of monitor 4 times.
As you can imagine one condition is made a little hard to treat because of the other, then you throw in the allergies and asthma, and we have several long days a year. My favorite part, is that it is our time. The car rides and the waiting to be seen by the doctor gives us lots of time to be mommy and daughter. Everyday life is so busy, it gets harder to stop and just talk about nothing, or everything together. I can think of a million ways to spend a day or two with ChloeJace, and it doesn't include going to or from a hospital. You see, these are my Valentines days and if you were to ask ChloeJace she would say the same. If your Valentines day is February 14 or, or the Sunday afternoon when everything is calm and quite, enjoy it and embrace the time you have. It doesn't have to include gifts, or going out, it is what you make it.
Brian and I do not go out we do not exchange gifts on Valentines day, we know that our love can be celebrated any day. ChloeJace and I already have to special dates coming up, and for that I am thankful.
Saturday, February 12, 2011
Cheers
In a recent post I mentioned that when I was 11 I was drinking adult beverages. Well, that is not completely true. Some of my most early memories are of me drinking. You see my father would have parties and I would go around when no one was looking and I would take drinks. Or the kids would dance around the keg and take turns drinking. I don't ever remember being drunk or getting wasted. But then I again I was only around 4 or 5 and it is hard to remember everything.
I would get into trouble when I was caught. That didn't stop me. I also think there are a lot of others out there like me. Or I could be way off. By the time I was 11 it was easier for me. I had a brother and sister that were both older and they had older friends. Not that it was hard for my friends and I to get our own. You don't want to know how easy it was for young kids to get booze in a dry county, with a christian college. But it was!
Just keep in mind that my blogs are not a woohoo, or a list of things to do. I just recognize that I have done a lot of things wrong. I know there are more people out there like me, that are searching in faces and in places. But have not yet looked to Jesus. This might not be your story. Yours may be different. Just know that I am praying for you. I don't need to know your name, I know your pain. I will continue to pray for you.
I would get into trouble when I was caught. That didn't stop me. I also think there are a lot of others out there like me. Or I could be way off. By the time I was 11 it was easier for me. I had a brother and sister that were both older and they had older friends. Not that it was hard for my friends and I to get our own. You don't want to know how easy it was for young kids to get booze in a dry county, with a christian college. But it was!
Just keep in mind that my blogs are not a woohoo, or a list of things to do. I just recognize that I have done a lot of things wrong. I know there are more people out there like me, that are searching in faces and in places. But have not yet looked to Jesus. This might not be your story. Yours may be different. Just know that I am praying for you. I don't need to know your name, I know your pain. I will continue to pray for you.
Thursday, February 10, 2011
Happy Heart Month
I am very excited, found out today that I have been accepted to start a new SCAA (Sudden Cardiac Arrest Assc.) chapter. I probably should be a little more nervous, I have never started a chapter of any kind, except for books. I do know I have a lot of work ahead of me. Just knowing that I can get information out, and AED's where need is awesome!! I signed and mailed the agreement today, so I still have a week or so before the work begins.
SCAA is a non-profit organization and the chapter will be a 501C-3. All donations are tax deductible, we also accept gift "in-kind". I will have help with the start up through SCAA. But I am more than happy to accept any donations or in-kind to help the chapter get going. For the name of the chapter I was thinking Heart of America, Ohio is kinda the heart of America. It plays a big part in the presidential races.
If you cannot donate, please pray for the chapter. There are people out there that are walking around with heart conditions that don't know it. I cannot tell you the loneliness I felt when we got our diagnosis finding other like ChloeJace is hard. That also makes finding mother going through it with their children. This isn't just a condition for young people older people can have it too. Pray that we reach the people that feel they are all alone in this diagnosis, that we are able to save lives.
SCAA is a non-profit organization and the chapter will be a 501C-3. All donations are tax deductible, we also accept gift "in-kind". I will have help with the start up through SCAA. But I am more than happy to accept any donations or in-kind to help the chapter get going. For the name of the chapter I was thinking Heart of America, Ohio is kinda the heart of America. It plays a big part in the presidential races.
If you cannot donate, please pray for the chapter. There are people out there that are walking around with heart conditions that don't know it. I cannot tell you the loneliness I felt when we got our diagnosis finding other like ChloeJace is hard. That also makes finding mother going through it with their children. This isn't just a condition for young people older people can have it too. Pray that we reach the people that feel they are all alone in this diagnosis, that we are able to save lives.
Monday, February 7, 2011
Show Love
This is the month of LOVE, and is heart month. I can't think of a better way to say I love you then to do something bigger than me. I think there are lots of people out there like me, well not just like me, if you read my blog you won't want to be anything like me. What I mean is that, I have lots of stuff and sure would like more stuff, but it is just stuff and does not make me full, it just keeps me wanting more meaning less junk.
Here are two different families that are doing something more. Something bigger than them self.
Joe and Brandi Cash, they are in the process of following God to Africa to adopt a child. Here is her blog, they are selling shirts, and coffee to help raise money. That is a lot of coffee and shirts. Oh did I mention they also had a yard sale. Yes, the sold their stuff. Will you help them bring a child home?
Also there is The Wills,
Bobby and Paula, these two have sold everything they had to their name. Followed God to Thailand. Can you imagine leaving everything you have ever known to follow God. Most of us won't leave our home town! The are living God's work.
1) Commit to pray for the Wills and for the mission God has called them to in Thailand.
2) Commit to give of your financial resources for the mission God had called the Wills to in Thailand. You can do this by going to the website for United World Mission at United World Mission and click on donate online.
3) You can host a dessert part for the Wills and help them tell more people about this mission to Thailand. The more people that hear, the more that join their team of prayer and financial supporters. This is a simple event to host, no hassles and a lot of fun.
4) You can let the Wills know of people you think would like to hear about this mission. The more we work together the larger the work force grows and we can reach the lost people of Thailand quicker. You can reach the Wills via email at: Paula and Bobby
5) You can tell your small group, Sunday school class, UMW group at church, your discipleship group or your children’s groups and homeschool groups about this mission God has called the Wills to and perhaps your group can adopt them as your missionary family. This is educational for everyone and gets all people involved in the Great Commission when we work together.
THANK YOU!
Here are two different families that are doing something more. Something bigger than them self.
Joe and Brandi Cash, they are in the process of following God to Africa to adopt a child. Here is her blog, they are selling shirts, and coffee to help raise money. That is a lot of coffee and shirts. Oh did I mention they also had a yard sale. Yes, the sold their stuff. Will you help them bring a child home?
Also there is The Wills,
Bobby and Paula, these two have sold everything they had to their name. Followed God to Thailand. Can you imagine leaving everything you have ever known to follow God. Most of us won't leave our home town! The are living God's work.
1) Commit to pray for the Wills and for the mission God has called them to in Thailand.
2) Commit to give of your financial resources for the mission God had called the Wills to in Thailand. You can do this by going to the website for United World Mission at United World Mission and click on donate online.
3) You can host a dessert part for the Wills and help them tell more people about this mission to Thailand. The more people that hear, the more that join their team of prayer and financial supporters. This is a simple event to host, no hassles and a lot of fun.
4) You can let the Wills know of people you think would like to hear about this mission. The more we work together the larger the work force grows and we can reach the lost people of Thailand quicker. You can reach the Wills via email at: Paula and Bobby
5) You can tell your small group, Sunday school class, UMW group at church, your discipleship group or your children’s groups and homeschool groups about this mission God has called the Wills to and perhaps your group can adopt them as your missionary family. This is educational for everyone and gets all people involved in the Great Commission when we work together.
THANK YOU!
Busy Week.
This past week has been a busy week. Last Monday I revived ChloeJace's AED (automated external defibrillator) in the mail. This has been an ongoing process since August of 2010. The day finally came and it was here. However I wasn't prepared for the emotions that came with it. I have used an AED before, so I am not a stranger to the machine. But the thought that this was for My child, someday it could save her life. I can't help but pray that this machine is a waste of money and time for everyone involved.
The day the AED came, was perfect timing. ChloeJace had her first quiz bowl, and her teacher is not yet CPR certified. George and I were able to go and support ChloeJace and carry around this machine, so that she was able to attend. She did wonderful. This is her third year being in quiz bowl, for most of the kids it is there first year, for others it is their second. The most wonderful thing is being able to see my child, getting to be a child. Long QT syndrome has taken away so much of her child hood.
Later this week we were able to go to Cincinnati Children's Hospital and participate in a sleep study for LQTS. We made the 2.5 hour drive to the hospital. That was another thing I thought I was prepared for but was not. One thing that ChloeJace has not has is a sleep study. The respiratory therapist began the hour long process of putting the electrodes on ChloeJace, and a 12 lead EKG, pulse ox, ect. What we were doing was to help others that have LQTS. Certain types are more prone to suffering sudden cardiac arrest in their sleep. When that happens you don't wake up. I could tell with all the wires on that ChloeJace was scared, I was scared. In her life she has been in the hospital so much! Although scary I was happy that even at the age of 11, she was doing something that could help save others. At her age I started drinking, so to see her do such a selfless thing was wonderful.
I know God has a perfect plan for her life, I can't wait to see where she is in 11 more years
The day the AED came, was perfect timing. ChloeJace had her first quiz bowl, and her teacher is not yet CPR certified. George and I were able to go and support ChloeJace and carry around this machine, so that she was able to attend. She did wonderful. This is her third year being in quiz bowl, for most of the kids it is there first year, for others it is their second. The most wonderful thing is being able to see my child, getting to be a child. Long QT syndrome has taken away so much of her child hood.
Later this week we were able to go to Cincinnati Children's Hospital and participate in a sleep study for LQTS. We made the 2.5 hour drive to the hospital. That was another thing I thought I was prepared for but was not. One thing that ChloeJace has not has is a sleep study. The respiratory therapist began the hour long process of putting the electrodes on ChloeJace, and a 12 lead EKG, pulse ox, ect. What we were doing was to help others that have LQTS. Certain types are more prone to suffering sudden cardiac arrest in their sleep. When that happens you don't wake up. I could tell with all the wires on that ChloeJace was scared, I was scared. In her life she has been in the hospital so much! Although scary I was happy that even at the age of 11, she was doing something that could help save others. At her age I started drinking, so to see her do such a selfless thing was wonderful.
I know God has a perfect plan for her life, I can't wait to see where she is in 11 more years
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