Manie's Blog

3Hours To Get There and 3hours Home

2009-12-09T21:09:00.013-06:00

That is how long it took to get to Manie's app. in Iowa City and how long it took to get home.

A drive that we have taken many many times before which usually last an hr. to an hr and a half took what seemed like forever.The winter storm began yesterday and continued all day today. We braved dangerous white out conditions, icy interstate roads and 50-55 mile an hr. winds to get Manie to his app. This is not the first time we have had to travel in such horrible conditions. However it never gets any easier, but we must do what we must do to get Manie the care he need.

Here is some of what we experienced on the way there....

It started off with getting stuck within feet of our driveway. Russell had to get out and shovel and still we were going no where. Lucky for us a two young men were driving by and offered to help by attaching a chain and pulling us out. Yes there are still some nice people left in the world.

This next pic is of a little something called a white out condition

When you could see something which was not very often you would see something like this...

Yes that is a semi in the ditch! They were all over the place. You could not travel more then a mile or two without seeing someones car, van, truck or semi in the ditch.

We finally arrived at Manie's appointment. They called us right back and we got to see the dr. right away. Everyone else had called in and rescheduled their appointment for another time. I did not reschedule because I knew it would be another month of waiting to see the GI dr. At least we got in right away and was able to see the dr. After our short visit with the dr. Manie had to get his blood taken for more test. Of coarse they could not find a vein so they aimlessly poked around his right arm for about 15min. then moved to his left arm. Finally after about a half an hour they were able to get blood. Poor Manie.

We were all ready to get home after that. When we got in the van and ready to go Russell turned the key and the battery was dead. At least we were in the parking garage and the hospital has maintenance people. It took a little while for the guy to get to us, but at least he was able to give us a jump. About half way home it got completely dark making horrible condition even worse. Thank you Russell for being so brave and getting us to the appointment and back home safe and sound. I am so happy to be home where it is nice and warm. Although we still really don't have any more answers about Manie's health condition at least we are on our way to hopefully figuring out how we can help Manie to feel better and one more appointment closer to finding out why he is having the problems that he is having.

Here are some pics from the way home...

Paxil side effects - Paxil lawsuit |LawyersandSettlements.com

2009-12-15T05:18:00.000-06:00

Paxil side effects - Paxil lawsuit LawyersandSettlements.com

The American Law Journal will air a live, one-hour broadcast about Paxil and birth defects Monday December 7, 7-8pm

2009-12-05T08:10:00.002-06:00

7-8 live "Paxil On Trial: Antidepressants, Kids and Birth Defects"

Lawyers, doctors and a law professor argue the merits of a recent Philadelphia case where a woman prevailed in her claim that an antidepressant that she was taking caused severe harm to her child. Attorneys Jamie Sheller, Anthony Marchetta, Drexel Health Law Professor Barry Furrow and Rajnish Mago, MD of Thomas Jefferson University Mood Disorders Clinic answer viewer calls at 1-800-426-4526

Viewer calls are screened and moderated. Please call only with questions that would help other viewers. Visit the program's Facebook page, The American Law Journal, to share your story and post your thoughts.

You can watch this on Monday Dec. 7th - 7-8pm US EST live stream at the following link: www.wfmz.com
PA, NJ, DE residents go to www.wfmz.com/cable.asp for cable channel, Direct TV, or Dish Network channel numbers.

Top blog award

2009-11-10T12:37:00.001-06:00

Bigpharmavictim.blogspot.com has just recieved an award for top blog from Disease.com

How long did it take you withdraw from Paxil?

2009-11-02T18:34:00.003-06:00

Go to http://www.fiddaman.blogspot.com/ to take the poll how long did it take you to withdraw from Paxil

Monday Oct.12 2009 The Appointment

2006-05-01T00:30:00.001-05:00

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.

GSK GUILTY

2006-05-01T12:35:00.000-05:00

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

Manie's Appointment Part 2

2006-05-01T00:36:00.000-05:00

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.

2006-05-01T00:38:00.000-05:00

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.

THE RADISSON ROCKS

2006-05-01T00:40:00.000-05:00

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.

Reoccurring Nightmare

2006-05-01T00:50:00.000-05:00

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

NEW STUDY

2006-05-01T00:55:00.000-05:00

Breaking News - Our Most Recent Serotonin Nightmares.

SSRI: 100-500% Increased Risk of Heart Birth Defects If Taken In Early Pregnancy

By atracyphd on September 26, 2009

Go to www.drugawareness.org to read about this new study. While you are there click on Manie's pic. to read more.

What This Blog Is About

2008-03-13T04:34:00.008-06:00

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.

Watch Manie Receive His Orange Stripe!

2006-05-01T00:59:00.000-05:00

Watch it HERE and see other pics here

Who Could Do This On Purpose

2012-04-26T10:18:00.000-05:00

Read this blog to find out

ORANGE BELTS!

2006-05-01T01:00:00.000-05:00

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

5/14/09 PNEUMONIA :(

2006-05-01T01:29:00.000-05:00

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.

2nd stripe

2006-05-01T01:02:00.000-05:00

May 1st 2009

Manie received his 2nd stripe in Tae Kwon Do! Grif, Manie's older brother also received his first stripe. Grif decided to start Tae Kwon Do after going to Manie's class and seeing how much fun Manie was having. I am so proud of my boys! Congrats you guys!

5 Years Ago Today

2006-05-01T01:03:00.000-05:00

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!

Manie Had A Wonderful Birthday Bash!!!

2006-05-01T01:05:00.000-05:00

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.

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

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

HAPPY BIRTHDAY again MANIE I LOVE YOU SOOOOOO MUCH
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 Go

CONGRATS MANIE!!!!!

2006-05-01T01:08:00.000-05:00

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

Sydney Is Helping Hearts!!!! Jump Rope For Hearts

2006-05-01T13:08:00.000-05:00

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

Tae Kwon Do

2006-05-01T01:10:00.000-05:00

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!

What an outrage!

2006-05-01T01:15:00.000-05:00

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.

Our Summer 2008

2006-05-01T01:20:00.000-05:00

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!