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What This Blog Is About
This blog is about Manie a little boy born with a rare heart defect because of Paxil use during pregnancy.GSK knew that Paxil could cause birth defects, but they said nothing. Manie and the rest of us are from Waterloo, Iowa. This blog is his story of courage and strength. By telling Manie's story I hope to save the lives of innocent babies. I hope to save mother's from the guilt of knowing that something they did caused their babies to be born with a birth defect. Manie is saving lives with his story, he is a hero. Anyone who wants to contact me can do so at give2manie@yahoo.com.
Please Leave a Comment To Support Manie and Read "Why Manie" to Find Out Why Manie Was Born With TGA
We would like to know what you think. Please feel free to leave a comment in support of Manie!Also make sure you check out the links under alot of information.
When Manie Was Born
I had a normal pregnancy with Manie. I even had a couple of ultrasounds done while I was pregnant with Manie. There were no clues that Manie had a rare heart defect. I had already 3 perfectly healthy kids and did not expect for Manie to be any different.
As soon as Manie was born he began to turn blue. The more he cried the more he turned blue. Our doctor did not know what was wrong with Manie. The doctor thought that it might be his heart or his lungs.
Manie was flown to a hospital an hour and a half away from where we live. I had to stay at the hospital where I had Manie. The doctors called me when Manie arrived and told me Manie had transposition of the great arteries.
I was told that Manie had to have a procedure done to save his life. The doctors went through the artery on the inside of Manie's right leg. The doctors snaked a balloon all the way through the artery to Manie's heart. Once the doctors were in Manie's heart they blew the balloon up and ripped a hole in Manie's heart.
In the days following the surgery Manie's leg and foot started to turn a dark purple. The doctors told us that Manie may have to have his leg amputated because the procedure damaged the artery in Manie's leg.
Right before Manie's open heart surgery the doctors put Manie on blood thinners. Shortly after putting Manie on blood thinners they were able to detect a pulse in Manie's foot. Manie kept his leg.
As soon as Manie was born he began to turn blue. The more he cried the more he turned blue. Our doctor did not know what was wrong with Manie. The doctor thought that it might be his heart or his lungs.
Manie was flown to a hospital an hour and a half away from where we live. I had to stay at the hospital where I had Manie. The doctors called me when Manie arrived and told me Manie had transposition of the great arteries.
I was told that Manie had to have a procedure done to save his life. The doctors went through the artery on the inside of Manie's right leg. The doctors snaked a balloon all the way through the artery to Manie's heart. Once the doctors were in Manie's heart they blew the balloon up and ripped a hole in Manie's heart.
In the days following the surgery Manie's leg and foot started to turn a dark purple. The doctors told us that Manie may have to have his leg amputated because the procedure damaged the artery in Manie's leg.
Right before Manie's open heart surgery the doctors put Manie on blood thinners. Shortly after putting Manie on blood thinners they were able to detect a pulse in Manie's foot. Manie kept his leg.
What is Transposition of the Great Arteries(TGA)
TGA means the aorta and pulmonary arteries in the heart are switched. When a child is born with TGA there is very little oxygen in the blood. The aorta receives the oxygen-poor blood from the right ventricle, but it's carried back to the body without receiving more oxygen. The pulmonary artery receives the oxygen-rich blood from the left ventricle but carries it back to the lungs. 
Manie before his open heart surgery.
After the Surgery
Manie had open heart surgery when he was 8 days old. Manie had an arterial switch. Because of the surgery Manie has a leaky valve. Manie's surgery lasted 12 hrs.
Facts about Manie
Manie is 4 years old.
Was born with Transposition of the Great Arteries.
Had a balloon procedure shortly after birth to keep him alive.
Had open heart surgery at 1 week old.
Had 3 cardiac caths to correct problems with collaterals.
Has had several coils put in his collaterals.
Has a leak in his valve.
Was born with Transposition of the Great Arteries.
Had a balloon procedure shortly after birth to keep him alive.
Had open heart surgery at 1 week old.
Had 3 cardiac caths to correct problems with collaterals.
Has had several coils put in his collaterals.
Has a leak in his valve.
Manie has to take medicine for high blood pressure.
Manie has also suffered from acid reflux
Manie was on an adult dose of meds for acid reflux for six months.
Because of the acid reflux Manie has bad teeth. His baby teeth are ruined.
When Manie goes to the dentist he has to have dental work done with out Novocaine or nitrous oxide.
Manie has also suffered from acid reflux
Manie was on an adult dose of meds for acid reflux for six months.
Because of the acid reflux Manie has bad teeth. His baby teeth are ruined.
When Manie goes to the dentist he has to have dental work done with out Novocaine or nitrous oxide.
Manie has three sisters and one brother. Manie is number four out of five kids. Manie loves to hunt frogs and go fishing. Manie loves being outside in the summer time.
Why Manie?
The reason why Manie was born with a congenital heart defect was because of my ingestion of an antidepressant while I was pregnant. I took Paxil within the first three months that I was pregnant with Manie. At the time that I was pregnant with Manie Paxil was a class C drug. Now Paxil is a class D drug.
I will be adding to this blog about Manie and his connection to birth defects caused by Paxil
5/26/07 New
It has recently been brought to my attention that it while I was taking paxil in 2003 during my pregnancy it is possible it was a category B drug not a category C.
According to Mosbys 2003 Drug Reference here are the definitions for categories for prescribing medication to pregnant women.
What is a category B:
No adverse effects in animals, no human studies available.
What is a category C:
Only given after risks to fetus are considered; animal studies have shown adverse reactions, no human studies available.
What is a category D:
Definite fetal risk, maybe given in spite of risk if needed in life-threatening conditions.
What could be so important to risk a unborn baby's life? If something is life-threatening I would think a person should be under supervision as not to hurt them self or their unborn child.
In Mosbys Drug Reference Paxil is a category B drug in 2003.
Now I ask when did Glaxo know about paxil causing birth defects???????? Now that is a good question isn't it.
According to Mosbys 2003 Drug Reference here are the definitions for categories for prescribing medication to pregnant women.
What is a category B:
No adverse effects in animals, no human studies available.
What is a category C:
Only given after risks to fetus are considered; animal studies have shown adverse reactions, no human studies available.
What is a category D:
Definite fetal risk, maybe given in spite of risk if needed in life-threatening conditions.
What could be so important to risk a unborn baby's life? If something is life-threatening I would think a person should be under supervision as not to hurt them self or their unborn child.
In Mosbys Drug Reference Paxil is a category B drug in 2003.
Now I ask when did Glaxo know about paxil causing birth defects???????? Now that is a good question isn't it.
Manie's Last Procedure March 2007
Here are some pictures from Manie's last procedure. Manie had another cardiac cath done. Manie had 6 more coils added to plug up collaterals that were growing off of his heart. Manie had to have the procedure done 16 days after his birthday. What a birthday present huh.
The procedure lasted five and a half hours. This was his shortest surgery yet. Manie had some problems with bleeding from the incision site and alot of throwing up after the surgery. But yet Manie never complains. Manie you are my hero I love you baby!
Below is a pic of the holes left on Manie's leg after the cath.
Like I said the surgery lasted five and a half hours. We were at the hospital for a total of about 14 hrs before they let us take Manie home. The surgery started at 7:00 am we made it home at 11:00 pm.
I look at the picture above and I wonder what Manie is thinking. He is probably wondering what has happened to him. One minute I am holding him on my lap forcing him to breath through a gas mask then the next he is waking up feeling like hell.
Not once has Manie questioned me why I have to take him to have these things done to him. It makes me cry knowing that someday I will have to tell him what happened. All I can do is be there to hold him and tell him I love him.
CAUTION!!!!!!! This could happen to your baby.
This is what I have to say to any one who is pregnant or could become pregnant. If you are depressed get help indeed. However please think about this...
Wouldn't it be better to seek some other kind of help for your depression? I have been through having a child with a birth defect and I will always be going through it. I can never turn back the hands of time and not take that pill. Unlike you I did not know. I did not have a clue. Until recently I did not know why Manie was born with a heart defect.
I looked and looked for a reason why and always came up with nothing. Until one day I found out that it was because I took paxil. The guilt I feel will never go away even though it was not my fault. If you think that you are depressed now wait until your life is flipped upside down when your baby is born with a horrible birth defect like Manie was.
Wouldn't it be better to seek some other kind of help for your depression? I have been through having a child with a birth defect and I will always be going through it. I can never turn back the hands of time and not take that pill. Unlike you I did not know. I did not have a clue. Until recently I did not know why Manie was born with a heart defect.
I looked and looked for a reason why and always came up with nothing. Until one day I found out that it was because I took paxil. The guilt I feel will never go away even though it was not my fault. If you think that you are depressed now wait until your life is flipped upside down when your baby is born with a horrible birth defect like Manie was.
These Are A Few of Manie's favorite Things
I thought I would list a few of Manie's favorites.
People:
Mom and Dad who love him and will do anything for him. Manie also loves to play with his big brother Grif and little sister Lilly.
His favorite people to annoy are his oldest sisters Haley and Alex.
Manie always gets excited when his Aunt Cindy comes over. Manie really enjoys teasing his cousins Kelsey and Sid, but he thinks that his cousin Derrick is the coolest! For some reason when cousin Camille comes over and tries to give him a kiss he runs and hides (just for fun though). Manie really likes Camille's boyfriend Matt who plays video games with him.
Manie also has Uncle Kenny who prays for him a lot.
Manie loves to see Grandpa and Uncle Chris and can not wait for them to come over and hates it when they leave.
Manie always loves to see Grandma too! Grandma always has hugs and kisses for everyone.
Movies:
How The Grinch Stole Christmas starring Jim Carrey. Oh my we have watched that movie countless times. It is almost June and we are still watching that movie. Sometimes at night when Manie is not feeling well and wakes up the only thing that gives him comfort is watching "The Grinch" as he calls it.
Other stuff:
Manie loves to go to a lake by our house and hunt frogs and go fishing.
Manie also likes to go to the park.
Manie really likes to go to the mall and play video games.
Manie also loves to dance especially to 80s music.
Books:
Manie has so many favorite books that we can not just narrow it down to one. Manie loves to be read to so any book you read is his favorite.
Food:
Manie loves all his vegies and anything with cheese on it.
These are a few of Manie's favorite things if I come up with anything else then I will post it here.
People:
Mom and Dad who love him and will do anything for him. Manie also loves to play with his big brother Grif and little sister Lilly.
His favorite people to annoy are his oldest sisters Haley and Alex.
Manie always gets excited when his Aunt Cindy comes over. Manie really enjoys teasing his cousins Kelsey and Sid, but he thinks that his cousin Derrick is the coolest! For some reason when cousin Camille comes over and tries to give him a kiss he runs and hides (just for fun though). Manie really likes Camille's boyfriend Matt who plays video games with him.
Manie also has Uncle Kenny who prays for him a lot.
Manie loves to see Grandpa and Uncle Chris and can not wait for them to come over and hates it when they leave.
Manie always loves to see Grandma too! Grandma always has hugs and kisses for everyone.
Movies:
How The Grinch Stole Christmas starring Jim Carrey. Oh my we have watched that movie countless times. It is almost June and we are still watching that movie. Sometimes at night when Manie is not feeling well and wakes up the only thing that gives him comfort is watching "The Grinch" as he calls it.
Other stuff:
Manie loves to go to a lake by our house and hunt frogs and go fishing.
Manie also likes to go to the park.
Manie really likes to go to the mall and play video games.
Manie also loves to dance especially to 80s music.
Books:
Manie has so many favorite books that we can not just narrow it down to one. Manie loves to be read to so any book you read is his favorite.
Food:
Manie loves all his vegies and anything with cheese on it.
These are a few of Manie's favorite things if I come up with anything else then I will post it here.
Its that time again :( New 6/7/07
Soon Manie will have to go back to the dentist the end of June actually. I cross my fingers and hope that this time they will tell me that his teeth look good and we can go home. Last time we were there the student dentist that Manie sees told us we could go, then decided that they would just fix his teeth instead of making us come back.
The sound of his screams while he is getting his teeth worked on give me nightmares. The dentist tells me it does not hurt him to have his teeth worked on without Novocaine. Then after he has to have his teeth worked on we have to drive an hour and forty five minutes to get home.
We brush and brush Manie's teeth and it just does not seem to help. I feel bad for Manie because it is not his fault he has bad teeth it is that damn acid reflux. Well only positive thoughts from here on out.
Everyone please pray for Manie to have a good dental appointment. Thank You.
The sound of his screams while he is getting his teeth worked on give me nightmares. The dentist tells me it does not hurt him to have his teeth worked on without Novocaine. Then after he has to have his teeth worked on we have to drive an hour and forty five minutes to get home.
We brush and brush Manie's teeth and it just does not seem to help. I feel bad for Manie because it is not his fault he has bad teeth it is that damn acid reflux. Well only positive thoughts from here on out.
Everyone please pray for Manie to have a good dental appointment. Thank You.
Footsteps In The Sand
Footsteps In The Sand
One night a man had a dream.He dreamed he was walking along the beach with the LORD.Across the sky flashed scenes from his life.For each scene, he noticed two sets of footprints in the sand:one belonging to him, and the other to the LORD.
When the last scene of his life flashed before himhe looked back, at the footprints in the sand.He noticed that many times along the path of his lifethere was only one set of footprints.He also noticed that it happened at the very lowest and saddest times of his life.
This really bothered him and he questioned the LORD about it:"LORD, you said that once I decided to follow you,you'd walk with me all the way.But I have noticed that during the most troublesome times in my lifethere is only one set of footprints.I don't understand why when I needed you most you would leave me."
The LORD replied:"My son, My precious child, I love you and I would never leave you,During your times of trial and suffering,when you see only one set of footprints, it was then that I carried you."
Author unknown
Manie's trip to the dentist.
Yesterday June 22 Manie went to the dentist again. Same ol same ol. Manie has to go to the Center for Disabilities which is about an hour and a half away from where we live. So it is a hole day event just going to the dentist. There is not a dentist in our town that will work on his teeth because of his heart condition. The Center for Disabilities is part of the University hospital where Manie had his open heart surgery after he was born and where he goes to have other procedures done.
On the way to the dentist Manie has to take a dose of antibiotic. The antibiotic is so Manie does not get an infection from having his teeth worked on. Manie has pits in his heart which is a side effect of open heart surgery. If Manie was to get an infection the infection would go to his heart and settle or stick to the pits in his heart.
So we get to the dentist and yet again we have a different student dentist to work on Manie's teeth. I suppose I should explain this better. The hospital that Manie goes to is a learning hospital so it is also a learning dental office. For us this means that Manie gets to have students working and learning on him. Why would you have a STUDENT working on a kid with a heart condition? That is how we have to do it because of insurance.
So every time we go to the dentist it is a different student working on his teeth. This time the student fixed two of his teeth (No Novocain or Nitrous Oxide). All of the student dentists that have worked on his teeth have said "he can not feel any pain." I believe that he does feel pain when they are working on his teeth. The screams that come from Manie when he is having dental work done are so bad that I can not even describe it. It can make you have nightmares.
So the appointment starts off with me having to tell about Manie's heart defect AGAIN. I feel like a broken record. Then Manie gets up in the chair and he is a little nervous but still doing OK at this point. Then the student looks at his teeth( Manie is still doing good). I have to mention here that in the past when we have taken Manie to the dentist I have been told that Manie will not remember anything that was done to him. The student grabs the little mirror to look at Manie's back teeth. As soon as Manie sees the mirror he starts to cry and scream. He just wanted out of there. But if he does not remember anything then why is he scared of the mirror. I will tell you why it is because he knows that metal in his mouth = pain.
So now Manie is frantic and wanting to get out of there. So I have to hold him down while the student works on his teeth. The student brings out the little metal scoop and starts digging at his tooth with it. Manie starts to be quite for a second then he starts to turn purple because he cant breath. Manie was choking on his own saliva and his nose was plugged with mucus. The student stopped for a second to let the assistant clear his throat. Then the work continues. The bite stick, which was a bunch of tongue depressors taped together, kept getting pushed to the back of Manie's throat which would make him gag and almost throw up. Then the student forgot that she had put a cotton ball in Manie's mouth and the assistant noticed that he was choking on it and just about to swallow it.
The whole time I am holding Manie down and telling him he was such a big boy and that he was doing so good. I feel like such a monster holding Manie down like that. However it is a good thing that I have to hold him down because I felt like I wanted to push everyone out of the way grab Manie and run out of the room.
Now comes the fun part (Not really I am just being sarcastic). The student starts acting like it is my fault that Manie's teeth are bad. So I now have to explain that his teeth are bad because of the acid reflux he had. Still the student does not believe me and insist on going on about it. Why are there medical charts if they don't bother to look at them? I explain to her again and tell her about the adult dose of acid reflux medication Manie had to take cause it was so bad and about how he had to have scopes done etc.....All this info is in his chart mind you. Then the student starts to believe me and tells me that she can tell I brush his teeth because he does not have any plaque build up.
When he first started going to the dentist at about a year old because his teeth were going bad and this was before we knew that he had been suffering with acid reflux I was blamed for it then too. I was told his teeth were bad because I was still nursing him and I needed to stop. So I have learned that they are just looking for someone to blame. I take care of my kids teeth. If I did not then why does Manie's older brother have perfect teeth and never had any cavities at all? I just took Manie's older brother and one of his older sisters to the dentist two weeks ago. Guess what no cavities and no problems. Hmmm what does that tell ya?
So it looks like Manie is going back to the dentist in four months and at that time the student said "they will talk to me about putting him under to have all his teeth done at once." I am not going to worry about that right now I guess. I will keep on brushing and praying that his teeth will be fine. Manie made it through another dental appointment and he is such a brave little boy. I am so proud of him.
This was just a small insite into what Manie has to go through. I wish I could take it all away and make it better for him, but all I can do is be there to love him.
On the way to the dentist Manie has to take a dose of antibiotic. The antibiotic is so Manie does not get an infection from having his teeth worked on. Manie has pits in his heart which is a side effect of open heart surgery. If Manie was to get an infection the infection would go to his heart and settle or stick to the pits in his heart.
So we get to the dentist and yet again we have a different student dentist to work on Manie's teeth. I suppose I should explain this better. The hospital that Manie goes to is a learning hospital so it is also a learning dental office. For us this means that Manie gets to have students working and learning on him. Why would you have a STUDENT working on a kid with a heart condition? That is how we have to do it because of insurance.
So every time we go to the dentist it is a different student working on his teeth. This time the student fixed two of his teeth (No Novocain or Nitrous Oxide). All of the student dentists that have worked on his teeth have said "he can not feel any pain." I believe that he does feel pain when they are working on his teeth. The screams that come from Manie when he is having dental work done are so bad that I can not even describe it. It can make you have nightmares.
So the appointment starts off with me having to tell about Manie's heart defect AGAIN. I feel like a broken record. Then Manie gets up in the chair and he is a little nervous but still doing OK at this point. Then the student looks at his teeth( Manie is still doing good). I have to mention here that in the past when we have taken Manie to the dentist I have been told that Manie will not remember anything that was done to him. The student grabs the little mirror to look at Manie's back teeth. As soon as Manie sees the mirror he starts to cry and scream. He just wanted out of there. But if he does not remember anything then why is he scared of the mirror. I will tell you why it is because he knows that metal in his mouth = pain.
So now Manie is frantic and wanting to get out of there. So I have to hold him down while the student works on his teeth. The student brings out the little metal scoop and starts digging at his tooth with it. Manie starts to be quite for a second then he starts to turn purple because he cant breath. Manie was choking on his own saliva and his nose was plugged with mucus. The student stopped for a second to let the assistant clear his throat. Then the work continues. The bite stick, which was a bunch of tongue depressors taped together, kept getting pushed to the back of Manie's throat which would make him gag and almost throw up. Then the student forgot that she had put a cotton ball in Manie's mouth and the assistant noticed that he was choking on it and just about to swallow it.
The whole time I am holding Manie down and telling him he was such a big boy and that he was doing so good. I feel like such a monster holding Manie down like that. However it is a good thing that I have to hold him down because I felt like I wanted to push everyone out of the way grab Manie and run out of the room.
Now comes the fun part (Not really I am just being sarcastic). The student starts acting like it is my fault that Manie's teeth are bad. So I now have to explain that his teeth are bad because of the acid reflux he had. Still the student does not believe me and insist on going on about it. Why are there medical charts if they don't bother to look at them? I explain to her again and tell her about the adult dose of acid reflux medication Manie had to take cause it was so bad and about how he had to have scopes done etc.....All this info is in his chart mind you. Then the student starts to believe me and tells me that she can tell I brush his teeth because he does not have any plaque build up.
When he first started going to the dentist at about a year old because his teeth were going bad and this was before we knew that he had been suffering with acid reflux I was blamed for it then too. I was told his teeth were bad because I was still nursing him and I needed to stop. So I have learned that they are just looking for someone to blame. I take care of my kids teeth. If I did not then why does Manie's older brother have perfect teeth and never had any cavities at all? I just took Manie's older brother and one of his older sisters to the dentist two weeks ago. Guess what no cavities and no problems. Hmmm what does that tell ya?
So it looks like Manie is going back to the dentist in four months and at that time the student said "they will talk to me about putting him under to have all his teeth done at once." I am not going to worry about that right now I guess. I will keep on brushing and praying that his teeth will be fine. Manie made it through another dental appointment and he is such a brave little boy. I am so proud of him.
This was just a small insite into what Manie has to go through. I wish I could take it all away and make it better for him, but all I can do is be there to love him.
HAPPY BIRTHDAY MANIE!!!!!!
I can not believe it Manie is turning four this Sunday!!! March 9Th 2004 was the day this old soul entered into this world. Every time Manie has a birthday it makes me think back to everything that happened that day. How the world seemed to come to a complete and total stop. How those around me seemed to move in slow motion. This was the day I became a different person and I watched as those around me became different too. I am so grateful that everyday is filled with the sound of Manie's voice and that I get the chance to make him smile time and time again.
Happy Birthday Manie We all love you soooo much
Happy Birthday Manie We all love you soooo much
"When The Student Is Ready The Teacher Will Appear"
That is one of my favorite phrases. Manie you are not only my inspiration you are also my teacher. There are many things in this world that I would not have known if not for you. I will do my best to make you proud to have me for a mother.
I Love You Manie
I Love You Manie
PLEASE
I just can not keep my mouth shut any longer about two studies about antidepressants and birth defects. I keep seeing it everywhere. Over and over I am hearing "Doctors and pregnant women can feel more at ease that women can take SSRI's during pregnancy." PLEASE what are they trying to do cause even more babies to be born with birth defects? There is a RISK these studies have just proven what everyone already knew about antidepressants and birth defects. OK so they are playing on the fact that it is a small risk. With birth defects so severe it is not worth it.
Why did they not ask me to be a part of their "study"? How about putting all of us mothers who took an antidepressant during pregnancy and had babies born with birth defects into a study. Guess what the stats would say then. 100% of women who took antidepressants had babies born with birth defects. Not such a low risk then is it.
I do not care if it is 1% or a 100% of women who take antidepressants that have children born with birth defects the suffering these babies have to go through is too much. What woman would want to be that 1%? No one would, but they are saying take the chance if you need too. GSK PLEASE stop funding these studies and misleading woman. Have you not done enough already. Except the fact that you did wrong instead of trying to belittle what my son and others have gone through with these studies that say the risk is so small. You are just trying to take some of the heat off. GSK it seems to me you have just made a big ass out of your self again. I for one am not fooled by your attempts to lessen what you have done. I only hope that other women listen to the whole story instead of just the headlines and realize that antidepressants do cause birth defects.
Why did they not ask me to be a part of their "study"? How about putting all of us mothers who took an antidepressant during pregnancy and had babies born with birth defects into a study. Guess what the stats would say then. 100% of women who took antidepressants had babies born with birth defects. Not such a low risk then is it.
I do not care if it is 1% or a 100% of women who take antidepressants that have children born with birth defects the suffering these babies have to go through is too much. What woman would want to be that 1%? No one would, but they are saying take the chance if you need too. GSK PLEASE stop funding these studies and misleading woman. Have you not done enough already. Except the fact that you did wrong instead of trying to belittle what my son and others have gone through with these studies that say the risk is so small. You are just trying to take some of the heat off. GSK it seems to me you have just made a big ass out of your self again. I for one am not fooled by your attempts to lessen what you have done. I only hope that other women listen to the whole story instead of just the headlines and realize that antidepressants do cause birth defects.
Blog against abuse
I have decided that in my post aganinst abuse I would rather just state the problem then say a few words about what we can do to make it better.
Big Pharma has been abusing people for profits.
This problem has been going on since the begining of Big pharma. We need to let "them" know that we are not going to tolerate this any longer. We need to let the government know that we demand something be done. Why is Big Pharma allowed to hurt people and get away with it. You have seen the pictures of Manie when he was born and you have heard me talk about the torture he has to deal with, if someone is responsible for his pain then why are they not punished?
Do not think for a minute that something like this could not happen to you. Do something about it before it does. Write to your Senators let them know how you feel about what big pharma has done in the past. Encourage them to do something about this. It is clear that big pharma does not care about anyone. If they are willing to hurt babies their is nothing that is going to stop them.
I say do some research on big pharma. Type big pharma into a search engine and see what comes up. Find out for yourself what has been going on that you do not know about. Be aware of what is going on take care of yourself because no one is looking out for you, but you.
Big Pharma has been abusing people for profits.
This problem has been going on since the begining of Big pharma. We need to let "them" know that we are not going to tolerate this any longer. We need to let the government know that we demand something be done. Why is Big Pharma allowed to hurt people and get away with it. You have seen the pictures of Manie when he was born and you have heard me talk about the torture he has to deal with, if someone is responsible for his pain then why are they not punished?
Do not think for a minute that something like this could not happen to you. Do something about it before it does. Write to your Senators let them know how you feel about what big pharma has done in the past. Encourage them to do something about this. It is clear that big pharma does not care about anyone. If they are willing to hurt babies their is nothing that is going to stop them.
I say do some research on big pharma. Type big pharma into a search engine and see what comes up. Find out for yourself what has been going on that you do not know about. Be aware of what is going on take care of yourself because no one is looking out for you, but you.
A Comment By Manie's Grampa
I Know He SmiledGod smiled when He made grandchildren~He's very wise, you see.
He knew how much I would love themAnd how much they would mean to me.
Each one is so different and specialWith dreams and Plans of their own, I love them so much as babies But even more now that they're grown.
Sometimes when I look in their facesI can see my own child there.
So I know God smiled when He made them And He keeps them in his care.
So if you should hear me boasting of things they do and say.
Just smile to yourself and be thankful You'll have some of your own ~someday.
GSK, how are your grandchildren?
Is just one of them worth the Billions of profit?
Mine is !!!!Manie's grampa
He knew how much I would love themAnd how much they would mean to me.
Each one is so different and specialWith dreams and Plans of their own, I love them so much as babies But even more now that they're grown.
Sometimes when I look in their facesI can see my own child there.
So I know God smiled when He made them And He keeps them in his care.
So if you should hear me boasting of things they do and say.
Just smile to yourself and be thankful You'll have some of your own ~someday.
GSK, how are your grandchildren?
Is just one of them worth the Billions of profit?
Mine is !!!!Manie's grampa
Damn THEM 8/8/07
Recently we went on a short vacation to a amusement park a couple hours away. My family has been going to this amusement park since before I was even born. It has become somewhat of a family tradition to go at least once every couple of years. It is a fun exciting place to be especially for the kids.
This year was different though. As I walked into the park I did not realize that I would have to deal with thoughts of GSK. I wanted to relax and just forget everything just for one day, but I could not.
The first ride we came too is somewhat of a tame ride. This ride you sit in lifts you up and spins you around. The ride is for adults and children alike. Russell, Manie's dad, asked Manie and his brother "Would you guys like to go on this ride with me?" Before the boys could say anything I noticed a sign which had pictures on it. A heart with a line through it and a blood pressure cuff with a line through it as well.
My heart fell into my stomach and I said "Russell Manie can not ride this ride." I pointed out the sign. I was in shock that my son would never get to experience that ride because he has heart problems and high blood pressure. Then as I thought about all the other rides in the park I started to get mad. How many other rides were going to say the same thing?
My next thought was of my ultimate favorite rides. The rides that as children we would always run to first. The Raging River and the Log Ride. We walked up to the rides and there were the signs again. This is the first time I have not been able to ride my favorite rides and I was disappointed, but even more I wanted to cry for Manie and the experiences that he will miss out on because of his heart problems. At least for this trip Manie is young enough that he was happy riding the baby rides. We will try to get to Disney World before Manie gets too old so he can at least experience the kid rides. That still will not compare to the thrill of riding the bigger rides, but it is better than nothing at all.
All my years of going to this amusement park and all the times I have passed by those signs never giving them a second look. Now they pertained to us they restricted us and what we could do. GSK has stolen this experience from my son. Shame on you GSK. DAMN IT! Why did you have to do this to Manie. Why do you not care about him and the other babies and people you have hurt.
What does this mean for the future of our family minivacation tradition? It looks like Manie will be stuck riding the Infant Ocean for the rest of his life or sitting and watching as everyone else has fun on the rides. It might be that the family will just have to find a new family tradition. What happens when Manie becomes a teenager and wants to go with his friends? Will he ride the rides anyways and risk it all just to find out what it feels like to ride the Mixer or the Dragon?
This vacation has left me thinking what else is there that Manie can't do because of his heart problems? I want to be able to tell Manie that he can do anything he wants and to never let his heart problems stop him, but in this case I can't say that because there are just somethings he will not be aloud to do. I hate using the word can't when it comes to any of my children. I always want my children to know they can do anything if they want it bad enough. I guess GSK has taken that away from Manie too.
HELL WEEK
Friday the October 19 2007
Manie's tooth began to hurt.
Manie gets put on Penicillin just in case of infection
recap: Manie had real bad acid reflux and was on an adult dose of prevacid for six months. The acid reflux ruined Manie's teeth. He goes to the dentist,an hour and a half away from where we live because no one else will work on him due to his heart condition. At this dentist in the past they have worked on his teeth without Novocaine or nitrous oxide. They strap him to a board and start digging.
Saturday 20th and Sunday 21st of October 2007
Manie's tooth is hurting so bad he ask me if I will take him to the dentist to take his tooth out. As terrified as Manie is of the dentist I know he must be in pain if he wants me to take him to the dentist.
Monday 22nd of October 2007
I called right away to get Manie in to the dentist. The only time they can work us in is Wednesday October 24. I take the appointment.
Tuesday October 23 2007
I was gone all morning and I finally got home around 11:30am. I checked my messages.A lady from the dentist office called and wanted me there at 1:00pm that day. I have five kids and three go to school so that was not going to be possible I would have never made it there on time. Then one of the dentist calls me back and tells me that they have a open spot for surgery on Friday the 26th of October,they wanted to put Manie under and do all his teeth at once.
AND SO IT STARTS
Wednesday 24th
We traveled an hour and half to the hospital where Manie has to see the cardiologist and have an echo and ekg done. We were there over an half an hour early and they called us back an hour after our appointment time. I had Manie, his baby sister Lilly and my son Grif with us. Grif had to miss school for three days because of Manie's surgery. Thank God that Manie's grandpa on his dads side was able to go and help with the kids.
Do you know how bad it is for the kids when they have to wait and wait and wait. Everything went alright and the cardiologist preapproved Manie for surgery.
We drove our hour and a half back home after our three and a hour hour event at the doctors.
Thursday 25th
We woke up extra early to be back up at the hospital for another check up this time with the dentist who would do the surgery and one of the hospitals pediatricians. Everyone had been sick with the flu and cold etc... so Manie had a runny nose and cough. They decided that Manie was healthy enough to go ahead with the surgery the next day. This one appointment took about two hours total and then we had to go to the other side of the hospital to the pharmacy to get the prescription for his antibiotic for the surgery. Any time Manie has surgery or dental work done he has to have an antibiotic to help prevent infection.
After dropping off the prescription we head to anesthesia because they have to also do a physical to ok him for surgery. I think it is a great idea to have all these Dr's checking him out making sure he is good enough to go through surgery, but the waiting is pure human torture especially when we are talking about little kids.
It was another hour wait at anesthesia. I had been told that the surgery would be at 6:00 Friday morning so we decided to get a hotel room instead of going all the way back home. When we got ready to leave the hospital the anesthesiologist told me that they would call me before 5:00 that evening to tell me what time surgery was the next day. Errrrr so I gave them my cell phone number three times because we were not going to be at home. I triple checked to make sure they had the right number then we left. We went and picked up the prescription and went to the hotel. I waited and waited for the phone call and never got one. I called the hospital at 5:15 and they told me they tried to call but I was not there and the answering machine was full. They had called my home phone not my cell phone and I had to give my cell phone number again because they did not have it.
Manie's surgery would be at 9:45am instead of 6:00 like they had told me. I was to give him the antibiotic at 8:45am and we had to be at the hospital at 8:45am. I took the antibiotic out and smelled it. WOW I have never smelled something so putrid in my life it smelled like a cross between decaying rotten feet and cow manure. I am not over reacting and it did not taste any better either.
Friday 26th SURGERY DAY
We woke up the next morning Manie had his last bit of apple juice at 7:45am and he could not have anything to eat at all. I tried to give him his dose of 18ml of feet and manure at 8:45am he gaged it back up so I bribed him in to taking it the second time he took it and kept it down. Manie is the toughest guy I know. I would have not taken that medication for anything.
We get Manie checked in and wait some more. About three hours more. The surgery was delayed because the surgery before his was taking extra time. Finally Manie gets called back for surgery. I get to hold him while they give him anesthesia he was so tired it took about five seconds for him to go to sleep. I told him I loved him and gave a kiss and went to wait for another three and a half hours. The dentist put caps on all his back teeth and did filling on the front ones. She also had to pull out one of his teeth because it was too far gone.
Manie pulled through and now he is sitting here playing with his new toy that I promised he would get if he took that horrid medicine. I thank God that everything went alright and we are back home.
Hell week is over!
Thanks everyone who prayed and helped out during this hard time.
WE LOVE YOU MANIE
Isn't This Against the LAW!!!!!!!!
I could not believe what I was reading this morning on seroxatsecrets blog. You have to be kidding me I thought.
Apparently GSK has bought Reliant a pharmaceutical company that makes HEART MEDS! Is it me or does something smell a little fishy here. Go to http://seroxatsecrets.wordpress.com/2007/11/21/oh-the-irony-of-it-glaxo-buys-reliant-pharma-for-165billion/to read the post.
Lets examine this situation. My son and others like him were born with HEART DEFECTS because of Paxil which came from GSK. Now these kids that are growing up with HEART CONDITIONS are going to need HEART MEDS probably for the rest of there life. Now GSK has bought a pharmaceutical company that makes HEART MEDS.
Isn't there a law against profiting off of the tragedy that you have caused? Does anyone know? If you do please contact me and inform me. If there is not a law against this there should be. I am disgusted about this. I am disgusted because the same company that caused my son so much pain is now going to probably profit from what they have done.
Apparently GSK has bought Reliant a pharmaceutical company that makes HEART MEDS! Is it me or does something smell a little fishy here. Go to http://seroxatsecrets.wordpress.com/2007/11/21/oh-the-irony-of-it-glaxo-buys-reliant-pharma-for-165billion/to read the post.
Lets examine this situation. My son and others like him were born with HEART DEFECTS because of Paxil which came from GSK. Now these kids that are growing up with HEART CONDITIONS are going to need HEART MEDS probably for the rest of there life. Now GSK has bought a pharmaceutical company that makes HEART MEDS.
Isn't there a law against profiting off of the tragedy that you have caused? Does anyone know? If you do please contact me and inform me. If there is not a law against this there should be. I am disgusted about this. I am disgusted because the same company that caused my son so much pain is now going to probably profit from what they have done.
Check This Out
Here is a table made to show all the reports to the FDA from 2004 to 2006 about Paroxetine (a.k.a Paxil and what any other name this posion goes by) The reports are for adverse reactions experienced by fetuses, newborns or their mothers. You can find the table here
Thanks to Sam at http://www.psychdrugdangers.com/NotApprovedForPediatricUse.html for taking the time to make this table. Visit his site for more interesting information.
Thanks to Sam at http://www.psychdrugdangers.com/NotApprovedForPediatricUse.html for taking the time to make this table. Visit his site for more interesting information.
One Thing That Comes With the Territory
It amazes me how stupid somethings just are. Like health insurance in America. Manie has government health insurance, called title 19. See here in America if you are poor enough for your child to get title 19 then you must stay poor to continue getting it. Manie's father and I are allowed $3,000.00 dollars in assets. How it works is we are allowed one car but if we have a second car they count it as an asset. We are allowed one house, which has to be the one we live in.
The extra car, anything else of value, any income, and money in the bank can not ever exceed $3,000.00 or Manie will lose his health insurance. Manie is only allowed $2,000.00 in assets total.
Now lets talk about health insurance. Manie can not go to the proper hospital because the health insurance in most cases will not cover out of state hospitals. When we have to take Manie to the hospital for heart checkup etc.. we have to make sure we have an O.K. from our regular doctor first. Yeah like I am going to be just sitting around one day and think just for the hell of it I will go get my kid a cardiac cath. Manie's medication that he needs to keep him as healthy as he can be will not be covered by government insurance. Yet this same government insurance will cover a man to go on Viagra even if he has committed a sexual crime.
Does this make any sense to anyone? What about private health insurance you might ask. Ha Manie had private health insurance through his fathers work when he was born. Can anyone say PREEXISTING CONDITION. Yep that's right just because he had the heart defect when he was born it is a preexisting condition and WA la they do not have to pay for anything. If it was not for government health insurance we would be screwed so I am grateful for what we have. I just don't understand why it works the way it does and why Manie can not get the proper care.
If it seems like I am ungrateful for what we have I am not. I am very grateful, but I watch day after day as my son looks worse and worse and wonder if there is something wrong with him. See the hospital he goes to can not find anything wrong, besides the fact that he has a leak in his valve, which was caused by the open heart surgery.
Last time I knew there was something wrong this same hospital told me Manie was fine and treated me like I was crazy. Months later they found the collateral's that had been growing off of Manie's heart. I had been right all along!(Not that I wanted to be, but a mother knows when there is something wrong) I think letting the collateral's go that long caused more problems then what they want me to know about.
I just wanted to share a couple of issues that arise when having a child with a heart condition or any health problem. If there is anyone out there who thinks they are alone know that I am here and there are others out there who understand.
The extra car, anything else of value, any income, and money in the bank can not ever exceed $3,000.00 or Manie will lose his health insurance. Manie is only allowed $2,000.00 in assets total.
Now lets talk about health insurance. Manie can not go to the proper hospital because the health insurance in most cases will not cover out of state hospitals. When we have to take Manie to the hospital for heart checkup etc.. we have to make sure we have an O.K. from our regular doctor first. Yeah like I am going to be just sitting around one day and think just for the hell of it I will go get my kid a cardiac cath. Manie's medication that he needs to keep him as healthy as he can be will not be covered by government insurance. Yet this same government insurance will cover a man to go on Viagra even if he has committed a sexual crime.
Does this make any sense to anyone? What about private health insurance you might ask. Ha Manie had private health insurance through his fathers work when he was born. Can anyone say PREEXISTING CONDITION. Yep that's right just because he had the heart defect when he was born it is a preexisting condition and WA la they do not have to pay for anything. If it was not for government health insurance we would be screwed so I am grateful for what we have. I just don't understand why it works the way it does and why Manie can not get the proper care.
If it seems like I am ungrateful for what we have I am not. I am very grateful, but I watch day after day as my son looks worse and worse and wonder if there is something wrong with him. See the hospital he goes to can not find anything wrong, besides the fact that he has a leak in his valve, which was caused by the open heart surgery.
Last time I knew there was something wrong this same hospital told me Manie was fine and treated me like I was crazy. Months later they found the collateral's that had been growing off of Manie's heart. I had been right all along!(Not that I wanted to be, but a mother knows when there is something wrong) I think letting the collateral's go that long caused more problems then what they want me to know about.
I just wanted to share a couple of issues that arise when having a child with a heart condition or any health problem. If there is anyone out there who thinks they are alone know that I am here and there are others out there who understand.
2007 REPORTS TELL ALL!!!!!!
Sam again has gone above and beyond being a wonderful person and going out of his way for someone else. Sam sent me another link to another table of reports to the FDA, Medwatch.
What was reported this time? It was reports of all the transpositon of the great arteries reported to medwatch of women who had used Paroxetein during pregnancy.
All of these reports were from 2007 . What did we all have in common. WE ALL TOOK AN SSRI
Here is the link http://www.psychdrugdangers.com/ParoxetineTGA.html.
REMEMBER.... TGA is a RARE heart defect.
What was reported this time? It was reports of all the transpositon of the great arteries reported to medwatch of women who had used Paroxetein during pregnancy.
All of these reports were from 2007 . What did we all have in common. WE ALL TOOK AN SSRI
Here is the link http://www.psychdrugdangers.com/ParoxetineTGA.html.
REMEMBER.... TGA is a RARE heart defect.
Our newest member7/08
This is Brian the newest member of our family. Brian is just a few weeks old and we are happy to have him here at our house. WELCOME
Mothers Act
The petition for the Mothers Act
http://www.thepetitionsite.com/1/stop-the-dangerous-and-invasive-mothers-act
Sydney Is Helping Hearts!!!! Jump Rope For Hearts
My niece Sydney is raising money for the American Heart Association through her school by being part of Jump for heart. Please go to Sydney's personal web page. Just click here
GSK GUILTY
I just don't know what to say about this right now. More later... Just got home from traveling over 600 miles round trip to see a dr. for Manie I just really do not know what to say right now
Obama Was Here!
Decemeber 15th, 2007
My oldest daughter and I seen Obama today. We were able get to meet Obama and invite him to visit Manie's blog.
Obama if you do visit I want to say Thank You. You took your time to hear what my daughter and I had to say.
My oldest daughter and I seen Obama today. We were able get to meet Obama and invite him to visit Manie's blog.
Obama if you do visit I want to say Thank You. You took your time to hear what my daughter and I had to say.
4 Years Ago On This Day March 17
March 17 2004 Manie was eight days old and having open heart surgery. For everyone else it is just another day well actually it is St. Patty's Day. For me this day has another meaning now. It is a day to remember how far Manie has come and how much he has had to go through to get here.
When I think back to that day my heart beats just a little faster. I think about seeing my baby being wheeled into the operating room. I think about the twelve hr. wait and about how that whole time I had to stop my mind from wandering into a place of what ifs and imagining what Manie looked like laying there with his chest cut open. I had to stop myself from questioning how the doctor was going to fix something so small and delicate. I had to let go and let God take care of it.
Finally after the twelve long hrs. of waiting and wondering I saw my baby being wheeled out of the operating room. My heart sank as I saw even more tubes and wires coming from his body. Four large drain tubes protruded from his tiny chest along with a pace maker. From the bottom of his little neck down to the top of his belly button there was a piece of tape where the doctor had stitched Manie back together. Manie's little body had already started to swell. Thousands of thoughts seemed to rush through my mind all at the same time. I just wanted to pick Manie up and wish all of his pain away.
The doctor came out and talked with us and told us that everything went fine. I knew it was a lie because an operation that was only suppose to take six hrs took twelve. I did not care I just wanted to be by Manie and never take my eyes off of him again. The strange part about it is that my baby was laying there looking like hell and I was grateful. I prayed to God and I thanked him that Manie was strong and he was still with me.
I could never make anyone understand the feelings that I felt on that day and I would not want too. As the tears stream down my face as I write this I know is this just another day for those at GlaxoSmithKline? Here is a message for you guys at GSK who like to read my blog...
Remember this day March 17 because this is a day I celebrate that my child was strong enough to live, but this is a day when you should hang your head in shame. On this day March 17 you forced Manie to be strong and experience hell just to live. Something that was rightfully his was taken and you made him fight to get it back.
When I think back to that day my heart beats just a little faster. I think about seeing my baby being wheeled into the operating room. I think about the twelve hr. wait and about how that whole time I had to stop my mind from wandering into a place of what ifs and imagining what Manie looked like laying there with his chest cut open. I had to stop myself from questioning how the doctor was going to fix something so small and delicate. I had to let go and let God take care of it.
Finally after the twelve long hrs. of waiting and wondering I saw my baby being wheeled out of the operating room. My heart sank as I saw even more tubes and wires coming from his body. Four large drain tubes protruded from his tiny chest along with a pace maker. From the bottom of his little neck down to the top of his belly button there was a piece of tape where the doctor had stitched Manie back together. Manie's little body had already started to swell. Thousands of thoughts seemed to rush through my mind all at the same time. I just wanted to pick Manie up and wish all of his pain away.
The doctor came out and talked with us and told us that everything went fine. I knew it was a lie because an operation that was only suppose to take six hrs took twelve. I did not care I just wanted to be by Manie and never take my eyes off of him again. The strange part about it is that my baby was laying there looking like hell and I was grateful. I prayed to God and I thanked him that Manie was strong and he was still with me.
I could never make anyone understand the feelings that I felt on that day and I would not want too. As the tears stream down my face as I write this I know is this just another day for those at GlaxoSmithKline? Here is a message for you guys at GSK who like to read my blog...
Remember this day March 17 because this is a day I celebrate that my child was strong enough to live, but this is a day when you should hang your head in shame. On this day March 17 you forced Manie to be strong and experience hell just to live. Something that was rightfully his was taken and you made him fight to get it back.
Where you at Obama? Call Me
Dear Mr. Obama,
When we met back in Dec. I gave you a flyer with information about Manie. You told me "I am aware of Paxil and birth defects." Don't you recall this? It was at a middle school here in Waterloo Iowa.
During your speech you mention about how it just takes one person to stand up and do something. I felt like you were speaking to me directly that day. Then when it was all over my daughter and I made our way up to the rope to shake hands with you. My daughter told you about her brother Manie and we gave you a flyer. Does this ring a bell? As you looked at the flyer of Manie you seemed very concerned about what had happened to him. You said something along the lines of how you have children and you understood because you would never want something like that to happen to them.
Then a couple of months later I found out that you support the Mothers Act. I tried to call you to talk to you about this and left a message with an assistant. Obama, I know you are busy, but I am free to talk whenever so please call me or email me( give2manie@yahoo.com) with a reason why you would support such an act. I left my contact info with your assistant. Also is it true that you except money from big pharma. I guess if you answer yes to that question then we don't really need to talk at all then do we.
Manie's Mom
Julie
When we met back in Dec. I gave you a flyer with information about Manie. You told me "I am aware of Paxil and birth defects." Don't you recall this? It was at a middle school here in Waterloo Iowa.
During your speech you mention about how it just takes one person to stand up and do something. I felt like you were speaking to me directly that day. Then when it was all over my daughter and I made our way up to the rope to shake hands with you. My daughter told you about her brother Manie and we gave you a flyer. Does this ring a bell? As you looked at the flyer of Manie you seemed very concerned about what had happened to him. You said something along the lines of how you have children and you understood because you would never want something like that to happen to them.
Then a couple of months later I found out that you support the Mothers Act. I tried to call you to talk to you about this and left a message with an assistant. Obama, I know you are busy, but I am free to talk whenever so please call me or email me( give2manie@yahoo.com) with a reason why you would support such an act. I left my contact info with your assistant. Also is it true that you except money from big pharma. I guess if you answer yes to that question then we don't really need to talk at all then do we.
Manie's Mom
Julie
5/14/09 PNEUMONIA :(
Manie came down with a really bad case of pneumonia on Sunday evening. Manie has been in the hospital, but is now home. Just hours after we got home Manie began to have the stomach flu (at least that is what I think it is). All day yesterday Manie was in horrible pain and sick to his stomach. This morning Manie's stomach still hurts, but he is able to keep his meds, food and liquids down. He is smiling and ready to play his video games.
Thanks to Manie's Aunt Cindy for helping during the hardest part! Thanks for all the prayers and good vibes everyone sent. Please everyone continue to pray for Manie.
Thanks to Manie's Aunt Cindy for helping during the hardest part! Thanks for all the prayers and good vibes everyone sent. Please everyone continue to pray for Manie.
Our Summer 2008
It has been awhile since I posted about what was going on here so here goes.
This summer started off pretty good. My sisters family and mine traveled to Chicago to six flags. We figured that we would take Manie there before he could not ride any of the rides. Well to our surprise he could not even ride the little kiddie rides. Even the little lady bug ride had little signs posted which said if you have a heart condition do not ride this ride. So the rides were a bust, but we made the most of it and did have loads of fun at the water park. The lazy river was the best!
Toward the end of June I traveled(with the help of the CCHR) to Washington D.C. I was able to get a meeting with Senator Grassley. Grassley happens to be Iowa's Senator how lucky is it that we happen to live in Iowa. Senator Grassley was very nice and was very concerned about Manie's Story. What an experience. I was so happy to get a chance to go to D.C. and tell Manie's Story. I hope telling his story brings awareness to those in the Senate that I talked to and maybe someday the Mothers Act will just go away. I also would like for Manie to meet Sen. Grassley in person.
Oh yes we can not forget the FLOOD OF 08' that is what they are calling it anyways. Yeah it got pretty bad and people are still trying to recover from it. Luckily for us the water got a couple of blocks away then stopped. It was kinda eerie to think that half our town was under water. Most of the town came to a stand still for a week or so. About the only tell tell sign left that there was a flood here in our town are the water marks left on the trees and just about all the parks need to be completely rebuilt. Well at least the playground areas anyways. There is also the Evansdale nature trail that may never recover because the bridge was pretty much demoslished by the flood waters. And last but not least the railroad bridge that got washed away.
The end of summer was pretty boring. Manie had a couple of trips to the dentist. We all know how that goes. Although I have to give Manie props for being so tough. I was really proud of how well he did during his last visit.
Well school has started back up and everyone is getting back into the swing of things. Manie is old enough for preschool now. I have chosen to home school him starting this year. He really enjoys learning about his colors and to my surprise he already knew how to sing the alphabet song. That is probably the works of one of the older children. Manie is due for another heart check up so be praying that it goes well.
Hope ya' all had a good summer!
`
What an outrage!
Yesterday 10/16/08 I received my newsletter from the National Birth Defects Prevention Study. Every since Manie was a baby we have received this newsletter. The NBDPS is part of the U.S. Department of Health and Human Services and Center for Disease Control and Prevention.
Well right on the front page there it was an article titled FEW RISK OF BIRTH DEFECTS FROM ANTIDEPRESSANT USE DURING PREGNANCY.
The article basically says that there is very little risk that antidepressants cause birth defects and by their own studies they found no increase risk of birth defects because of antidepressant use during pregnancy. I am sick about this. Can we jump into the year 2008 PLEASE! It has already been proven that antidepressants cause birth defects so GSK should just stop paying organizations to print out stupid little articles which say they don't. Hell the CDC is probably bought and paid for anyways.
I am sickened at the thought of all the women who are going to read this article and not know what the real risk are. This is why I have to continue to tell Manie's story. CDC should be ashamed. Then again maybe they are just a little because they do not even put the authors name on the article. Of coarse BIG PHARMA would take up a lot of room wouldn't it. My message to the CDC and Big pharma keep motivating me to talk more about what happen to Manie.
If I can find a link that works to this newsletter I will post it here.
Well right on the front page there it was an article titled FEW RISK OF BIRTH DEFECTS FROM ANTIDEPRESSANT USE DURING PREGNANCY.
The article basically says that there is very little risk that antidepressants cause birth defects and by their own studies they found no increase risk of birth defects because of antidepressant use during pregnancy. I am sick about this. Can we jump into the year 2008 PLEASE! It has already been proven that antidepressants cause birth defects so GSK should just stop paying organizations to print out stupid little articles which say they don't. Hell the CDC is probably bought and paid for anyways.
I am sickened at the thought of all the women who are going to read this article and not know what the real risk are. This is why I have to continue to tell Manie's story. CDC should be ashamed. Then again maybe they are just a little because they do not even put the authors name on the article. Of coarse BIG PHARMA would take up a lot of room wouldn't it. My message to the CDC and Big pharma keep motivating me to talk more about what happen to Manie.
If I can find a link that works to this newsletter I will post it here.
Tae Kwon Do
Manie has recently started Tae Kwon Do. I have been looking for something that Manie could do that would be fun but not leave him out of breath, sick and hiding because he gets wore out after five minutes. Yes that is how it goes. Manie plays for five mins (sometimes less) and he gets wore out. When it was nice out and we were able to go to the park Manie would go hide under the slide because he would not want anyone to know he was exhausted.
Russell and I would play tag with the kids and after just a couple of minutes of running around Manie would be no where to be found. It never failed, every time we would find him sitting under the slide red faced and breathing like he had just ran five miles. By the end of summer our fun games of tag were non existent. By the middle of fall we barely even went to the park anymore. We would ask "Who wants to go to the park!" Everyone would shout "Me" then you would hear Manie's tiny disappointed voice say "I don't."
I have never known a child who does not like to go to the park. I do now. I don't tell you this story to make you feel bad for Manie or to hate bigpharma anymore then you already do. I tell you this because I want everyone to share in my excitement about finding out that the local YWCA started Tots Tae Kwon Do. I felt like it was sent from heaven. It was the answer. Finally something Manie can do!
Manie does still have to sit down and rest a few times during class, but the teacher is very understanding. Manie loves the class so much and tries so hard. He has already learned to count to 4 in Korean. And calls his teacher Sir. I hope this will be a life long activity for him. I hope he is not to disappointed when I have to tell him he can not compete. But for now I am going to enjoy watching my son be part of a team and do something he enjoys!
CONGRATS MANIE!!!!!
Will he be able to remember it all? I thought to myself last night. I sat straight and at attention. I listened carefully as the teacher gave Manie his test for his stripes. Manie had worked very hard all week to learn everything he needed to know for the test. It started with strict orders from his teacher "Manie can you count to ten in Korean?" I held my breath as I listened. Then I heard this tiny little voice say "Hana, dul, set." and so on. He had it! Next was the tenets of Tae Kwon Do. He nailed it right on. Two ways to sit, what was char-yut, and jhoon-bi. It went on and on. Manie was like a well oiled machine pounding out the answers without any problems. Then Manie was told place your hand over your heart and say the Pledge of Allegiance. I held back the tears as I watch Manie say "I pledge allegiance to the flag of the United States of America, and to the Republic for which it stands: one Nation under God, indivisible, with Liberty and Justice for all." Another success! I looked to Russell sitting next to me. We looked at each other just long enough to know that we were both sucking back tears. My heart was pounding with excitement as I watch Manie go to the front of class and shake all the black belts hands and receive his stripes.
After my heart slowed down and class resumed I thought about Manie saying the Pledge of Allegiance. How could someone cause this little, precious boy any pain. They did it on purpose. They almost killed him. They made him suffer with pain that we probably will never know or understand.
Manie does not know what the words of the Pledge of Allegiance mean yet, but I do. That is why I tell Manie's Story because I want Justice for all, especially Manie. I want Liberty for every man, woman, and child. We the people should be indivisible. We must stand together and not let our rights swept under the rug. This is our country not just theirs. We should be the ones calling the shots and demanding our babies get Justice and our people stop being killed and hurt by BIG pHARMa. Times of new are upon us and it is no longer "Give me Liberty or give me Death." I say "Give everyone Liberty and Justice or I am going to blog about you and show everyone what you are until something is done. If we do not do something about making our America our America we will not have an America to bitch about or better yet be proud of anymore.
So everyone put your hands together for Manie because he is the future of America and the world. He is and will be a doer. GSK you made Manie sick with a broken heart, but you could not kill him. He is a fighter! CONGRATS MANIE! I am the luckiest and proudest Mom in the whole Universe. Thank you Manie for being so strong and for being my son.
Love Mom
After my heart slowed down and class resumed I thought about Manie saying the Pledge of Allegiance. How could someone cause this little, precious boy any pain. They did it on purpose. They almost killed him. They made him suffer with pain that we probably will never know or understand.
Manie does not know what the words of the Pledge of Allegiance mean yet, but I do. That is why I tell Manie's Story because I want Justice for all, especially Manie. I want Liberty for every man, woman, and child. We the people should be indivisible. We must stand together and not let our rights swept under the rug. This is our country not just theirs. We should be the ones calling the shots and demanding our babies get Justice and our people stop being killed and hurt by BIG pHARMa. Times of new are upon us and it is no longer "Give me Liberty or give me Death." I say "Give everyone Liberty and Justice or I am going to blog about you and show everyone what you are until something is done. If we do not do something about making our America our America we will not have an America to bitch about or better yet be proud of anymore.
So everyone put your hands together for Manie because he is the future of America and the world. He is and will be a doer. GSK you made Manie sick with a broken heart, but you could not kill him. He is a fighter! CONGRATS MANIE! I am the luckiest and proudest Mom in the whole Universe. Thank you Manie for being so strong and for being my son.
Love Mom
Manie Had A Wonderful Birthday Bash!!!
Yes that is Manie
Slushies, CottonCandy, Jumper, SandyCandy tubes, Airbrush Tattoos OH MY!!!!!
First I want to say a special THANKS to the people at Thorp Family Fun for helping us make Manie's 5th B-Day a really special one! You guys are great! http://www.thorpfamilyfun.com/
Thanks to everyone who came to celebrate with us. I know Manie loves it when everyone gets together and has fun.
Thanks to everyone who came to celebrate with us. I know Manie loves it when everyone gets together and has fun.
Manie's older more sophisticated cousin D-Rok sporting a cotton candy beard
Manie and Ash enjoying the blue slushy sugar rush BFF forever right guys
Manie and Ash enjoying the blue slushy sugar rush BFF forever right guys
Lilly gettin her self a princess tattoo
Manie taking a much needed break poor guy was sweating buckets.
I am still in shock over the fact that Manie is five now. In my mind I keep going back to being in the hospital with him and not knowing if he was going to make it. Russell and I would sit and talk about Manie growing up and all the things he would be doing like celebrating birthdays and playing with his big brother Grif. Watching Manie play and celebrate his 5th birthday was a dream come true.
I am so proud of the person Manie is and who he will be
I am so proud of the person Manie is and who he will be
HAPPY BIRTHDAY again MANIE I LOVE YOU SOOOOOO MUCH
nice frog tat Manie
Eat it up Grif 
Thats right I took your pic Cindy
nice frog tat Manie
Eat it up Grif 
Thats right I took your pic Cindy
way to hide from the camera guys
Alex having fun on the slide 
Go Manie Go5 Years Ago Today
5 Years Ago Today...
It is time for me to remember again a day that would change my life forever. 5 years ago today at one week old Manie underwent a 12 hour surgery to save his life. I watch him today and Thank God that he is here and I will spend this day like I do all days celebrating all life and enjoying our time together.
I will hold him in my arms and hug him. I will be extra grateful because I can remember when I was not allowed to hug or hold him. I will listen to his voice even his cries and feel so lucky because I will remember what it was like not to hear his voice or his cries because of the giant tube shoved down his little throat and the fact that he was unconscious. We will joke and play today. We will laugh and be together. We will worry today about things like wearing green so we don't get pinched!
I will spend my day with a smile on my face because I know 5 years ago today Instead of giving up and giving in Manie fought to be here. I can remember this day, even with all the pain and sadness that it was, and smile because out of the pain and the sadness came a the happiness that I call Manie. Thank you Manie for you determination and for being who you are I love you.
Happy St. Patty Day everyone. I hope you all feel as lucky as I do on this very special day!
It is time for me to remember again a day that would change my life forever. 5 years ago today at one week old Manie underwent a 12 hour surgery to save his life. I watch him today and Thank God that he is here and I will spend this day like I do all days celebrating all life and enjoying our time together.
I will hold him in my arms and hug him. I will be extra grateful because I can remember when I was not allowed to hug or hold him. I will listen to his voice even his cries and feel so lucky because I will remember what it was like not to hear his voice or his cries because of the giant tube shoved down his little throat and the fact that he was unconscious. We will joke and play today. We will laugh and be together. We will worry today about things like wearing green so we don't get pinched!
I will spend my day with a smile on my face because I know 5 years ago today Instead of giving up and giving in Manie fought to be here. I can remember this day, even with all the pain and sadness that it was, and smile because out of the pain and the sadness came a the happiness that I call Manie. Thank you Manie for you determination and for being who you are I love you.
Happy St. Patty Day everyone. I hope you all feel as lucky as I do on this very special day!
ORANGE BELTS!
Grif, Manie and I all got our orange belts tonight! YES you guys rock. Lilly test tomorrow night to get her stripes!
Update: Lilly has gotten a stripe! Way to go Lilly
NEW STUDY
Breaking News - Our Most Recent Serotonin Nightmares.
SSRI: 100-500% Increased Risk of Heart Birth Defects If Taken In Early Pregnancy
Go to www.drugawareness.org to read about this new study. While you are there click on Manie's pic. to read more.
Reoccurring Nightmare
Last night I had a reoccurring nightmare which I have had since I found out it was Paxil which caused Manie's birth defect. Usually I wake only remembering bits and pieces of my nightmare, but not this time. This time I woke with tears streaming down my face and a tear soaked pillow.
My Nightmare:
I saw myself standing there in the kitchen of our old house. This was the house I had been living in when I became pregnant with Manie. I knew right away exactly what moment from the past this was. It was so clear this time as if I was really there watching it all happen. Not only was I watching this happen I could physically feel everything that I felt that day. I watch and felt myself push the kitchen chair in that someone had left pulled out. I watch and felt myself get a glass of water. I even felt the coldness of the glass in my hand. I knew what was going to happen next because I had already done this.
At this time I felt someone holding my hand I looked down and it was Manie. He looked up at me and the sadness on his face let me know he knew what was about to happen too. As I looked at him I could hear his heart beating. I knew it was his because of the sound of it. His heart sounds different then any other heart because of the leak. As I continued to look at him I could hear my own heartbeat also. It was as if I could hear his heartbeat in my right ear and mine in the left, both beating at the exact same time. As I stood there looking at him my chest began to ache. With every heartbeat mine was changing to sound just like Manie's. I felt as if I had ran a marathon and had a heart attack all at the same time. Before I knew it the two heartbeats were now one. I felt scared and worried, but not for me for Manie.
I began to look around for something to help us. I remembered where we were and at what time. I realized I can stop this! As I looked straight ahead of me I saw myself taking the pill from the package. I screamed and I tried to move, but there was nothing I could do! I could not hear myself. My feet were locked to the floor. The more I watch the more I felt our heart pounding and the louder it became. I looked down at Manie and he just stand there crying as if he knew I could do nothing. I continued to scream but nothing worked. Then I could feel it, the feeling of that damn pill in my mouth and the drink of water that carried it down. I felt it as if it was really happening. In a last ditch effort to make it all better I closed my eyes and slowly instead of having just one heartbeat there was two again. The heartbeat in my right ear was normal and healthy. I gave Manie my heartbeat and I took his. As much as my heart ached with pain and as tired as I was I felt good inside. I could feel the scars on my chest. I looked at Manie's chest his scars were gone. Manie smiled at me and let go of my hand. I could not hear our hearts beating anymore, but I knew he would be alright.
Manie and I were no longer in that old kitchen, we were outside. I watched as Manie ran and ran and ran. I watched as he played football, basketball, baseball and hockey. I watched as he rode the scariest of amusement park rides. There was no more waiting in doctors offices, no more hospitals, no more leg and arm cramps and no more waking in the middle of the night in pain. There was no more medications. Manie did not look tired because he was not tired. He felt good he was finally able to do all the things he ever wanted because the child on the outside finally matched the child on the inside. My nightmare had become a dream. I woke to tears on my face and pillow because Manie was happy. Happy tears turned to sad tears as I slowly realized it was just a dream. The real nightmare is what I live. The nightmare is knowing I can't make it all better because I really can not change heartbeats with Manie.
Julie Edgington
My Nightmare:
I saw myself standing there in the kitchen of our old house. This was the house I had been living in when I became pregnant with Manie. I knew right away exactly what moment from the past this was. It was so clear this time as if I was really there watching it all happen. Not only was I watching this happen I could physically feel everything that I felt that day. I watch and felt myself push the kitchen chair in that someone had left pulled out. I watch and felt myself get a glass of water. I even felt the coldness of the glass in my hand. I knew what was going to happen next because I had already done this.
At this time I felt someone holding my hand I looked down and it was Manie. He looked up at me and the sadness on his face let me know he knew what was about to happen too. As I looked at him I could hear his heart beating. I knew it was his because of the sound of it. His heart sounds different then any other heart because of the leak. As I continued to look at him I could hear my own heartbeat also. It was as if I could hear his heartbeat in my right ear and mine in the left, both beating at the exact same time. As I stood there looking at him my chest began to ache. With every heartbeat mine was changing to sound just like Manie's. I felt as if I had ran a marathon and had a heart attack all at the same time. Before I knew it the two heartbeats were now one. I felt scared and worried, but not for me for Manie.
I began to look around for something to help us. I remembered where we were and at what time. I realized I can stop this! As I looked straight ahead of me I saw myself taking the pill from the package. I screamed and I tried to move, but there was nothing I could do! I could not hear myself. My feet were locked to the floor. The more I watch the more I felt our heart pounding and the louder it became. I looked down at Manie and he just stand there crying as if he knew I could do nothing. I continued to scream but nothing worked. Then I could feel it, the feeling of that damn pill in my mouth and the drink of water that carried it down. I felt it as if it was really happening. In a last ditch effort to make it all better I closed my eyes and slowly instead of having just one heartbeat there was two again. The heartbeat in my right ear was normal and healthy. I gave Manie my heartbeat and I took his. As much as my heart ached with pain and as tired as I was I felt good inside. I could feel the scars on my chest. I looked at Manie's chest his scars were gone. Manie smiled at me and let go of my hand. I could not hear our hearts beating anymore, but I knew he would be alright.
Manie and I were no longer in that old kitchen, we were outside. I watched as Manie ran and ran and ran. I watched as he played football, basketball, baseball and hockey. I watched as he rode the scariest of amusement park rides. There was no more waiting in doctors offices, no more hospitals, no more leg and arm cramps and no more waking in the middle of the night in pain. There was no more medications. Manie did not look tired because he was not tired. He felt good he was finally able to do all the things he ever wanted because the child on the outside finally matched the child on the inside. My nightmare had become a dream. I woke to tears on my face and pillow because Manie was happy. Happy tears turned to sad tears as I slowly realized it was just a dream. The real nightmare is what I live. The nightmare is knowing I can't make it all better because I really can not change heartbeats with Manie.
Julie Edgington
THE RADISSON ROCKS
The Radisson in Wisconsin close to the children's hospital is the best hotel I have ever stayed at. Mike at the Radisson has made Manie one happy camper. Right now we are in Wisconsin getting ready to take Manie to the heart doc. on Monday. People in Wisconsin are so nice. Thanks Wisconsin and thanks Mike and the Raddison! Keep reading more to come about our stay here and Manie's appointment.
Lock your doors and nail the windows shut murderers and child abusers are allowed to walk the streets and allowed to sell you prescription drugs, tooth paste and even weight loss plans just to name a few. GSK was found GUILTY of causing birth defects With their drug Paxil! Birth defects that cause pain, suffering and even death.
Manie's Appointment Part 2
After traveling a long long long way with 5 children to take Manie to see a heart specialist we are finally back home. First I have to say my kids are pretty awesome. They were on there best behavior most of the time. Of coarse there was some bickering amongst them at times, but for the most part they were on their best behavior.
Alot of times when you have a child like Manie who needs special attention alot( which he deserves for all he has been through and must continue to go through) I think the siblings are pushed aside. I don't think I tell my kids enough how much I appreciated all they do and that I know they sometimes have to take a back set to what is going on with Manie. SOooo thanks you guys for being such great kids and I love you guys so much.
Well about the appointment... Manie's little heart is a mystery it seems. For the longest time now we have been taking Manie to the Dr.s for his leg cramps, arm cramps, and alot of other complaints Manie has been having. No one can seem to figure out why he would be having these complaints. Well being a mother and having 5 children total, 4 of which do NOT have any heart problems, I know Manie physical condition just has never been up to par.
After the past couple of years of being told there is no reason for Manie to feel like he does We may have found the answer. I say may have because in order to find out if the problem comes from what the Dr thinks it comes from, Manie will have to have another cardiac cath. The cardiac cath is a procedure where the doctor will put a camera through and artery which runs along the inside of Manie's leg all the up to his heart where they can look at everything. Due to the dangers associated with this procedure the Dr. would like to wait as long as possible to do this but will be done with in the next year.
Many Echos or ultrasounds have been done on Manie's heart to see if they could find anything wrong( besides the leaky valve which was caused by open heart surgery do to the TGA Paxil caused). Every time they try and try to see the pulmonary vessels but they can never view them. This is because when you have had your arteries switched, like Manie has, those vessels are just hidden. Well it seem that these very vessels just may be what is causing Manies problems. This was found out in Wisconsin due to the fact the dr. could hear some problems in that area when listening to Manie's heart. Ahhh haaa makes sense huh.
If Manie had never had the collateral's which required coils then the Dr. maybe able to do a MRI or CAT scan to see the vessels. The coils Manie has in his chest will cause interference with the machines which means a pretty messed up picture of a whole lot of nothing. So until we have a cardiac cath done we really just don't know whats going on. All I can say is GSK did this they knew what they were doing and they knew what could happen long before Manie's little heart was formed. Seems pretty "outrageous" if you ask me.
Alot of times when you have a child like Manie who needs special attention alot( which he deserves for all he has been through and must continue to go through) I think the siblings are pushed aside. I don't think I tell my kids enough how much I appreciated all they do and that I know they sometimes have to take a back set to what is going on with Manie. SOooo thanks you guys for being such great kids and I love you guys so much.
Well about the appointment... Manie's little heart is a mystery it seems. For the longest time now we have been taking Manie to the Dr.s for his leg cramps, arm cramps, and alot of other complaints Manie has been having. No one can seem to figure out why he would be having these complaints. Well being a mother and having 5 children total, 4 of which do NOT have any heart problems, I know Manie physical condition just has never been up to par.
After the past couple of years of being told there is no reason for Manie to feel like he does We may have found the answer. I say may have because in order to find out if the problem comes from what the Dr thinks it comes from, Manie will have to have another cardiac cath. The cardiac cath is a procedure where the doctor will put a camera through and artery which runs along the inside of Manie's leg all the up to his heart where they can look at everything. Due to the dangers associated with this procedure the Dr. would like to wait as long as possible to do this but will be done with in the next year.
Many Echos or ultrasounds have been done on Manie's heart to see if they could find anything wrong( besides the leaky valve which was caused by open heart surgery do to the TGA Paxil caused). Every time they try and try to see the pulmonary vessels but they can never view them. This is because when you have had your arteries switched, like Manie has, those vessels are just hidden. Well it seem that these very vessels just may be what is causing Manies problems. This was found out in Wisconsin due to the fact the dr. could hear some problems in that area when listening to Manie's heart. Ahhh haaa makes sense huh.
If Manie had never had the collateral's which required coils then the Dr. maybe able to do a MRI or CAT scan to see the vessels. The coils Manie has in his chest will cause interference with the machines which means a pretty messed up picture of a whole lot of nothing. So until we have a cardiac cath done we really just don't know whats going on. All I can say is GSK did this they knew what they were doing and they knew what could happen long before Manie's little heart was formed. Seems pretty "outrageous" if you ask me.
Monday Oct.12 2009 The Appointment
I'm sitting here in this big huge wonderful suite at the Radisson in Wisconsin. I can't sleep as usual when we have to take Manie to the Dr. I have this horrible Knot in my stomach and I have been up for hours. I'm not worried about the visit with the Dr. so much as I am about making sure I remember to tell him all of Manie's complaints and hoping we have enough time to get through everything. I am watching Manie sleep right now at this very moment. I think to myself he is so innocent. He is so small but yet he loves so much. How could anyone put him through this? How could anyone be so careless?
I will post more about Manie and our trip to Wisconsin when we are back at home and settled in. Please everyone do not forget that right now there is a trial going on. Lets hope the jury sees through GSK's deception.
I will post more about Manie and our trip to Wisconsin when we are back at home and settled in. Please everyone do not forget that right now there is a trial going on. Lets hope the jury sees through GSK's deception.
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