I must say it is exciting and refreshing to come back and post about our newest son, Everett Scott! He weighed in at 8lbs. 15oz., 20 inches. He is my Chunky Monkey. Ian would love him as much as he would have loved Vance. Our family is now complete….2 healthy, loving boys and our Angel in heaven. With that said, nothing in life will ever be fully complete without Ian...there will always be that piece of our hearts missing. Our lives everyday life, holidays, special events will always be 'not quite perfect'. But with that said we are finally at a peaceful place and I think Ian would want us to be there. Life is so precious and Scott and I are enjoying all of our blessings.
Please enjoy our ‘sneak peek’ of Everett's professional newborn pictures. He looks more like Ian then Vance does. In fact Vance is quite the fair skinned child and still sporting those baby blues! Thank you to Kelly for yet again another awesome photo session. She has been photographing our family since I was pregnant with Ian!
http://kellyfisherphotography.com/blog/?p=427
Also, check out the http://iansvoice.org/gallery.aspx and click on Everett Scott - Ian's Newest Brother.
Keep smiling and remember, “Happiness is about the journey, not the destination.”
The Very Blessed Gromowski Family
The below 'poem' is from Healing Hearts Newsletter I receive. If only those who created the newsletter knew how much they helped others.
Moving On...
It’s what everyone
wants me to do
They all think that I should,
but no one tells me how.
Moving on...
Is it some kind of a trip?
Does it require a destination?
I hardly have energy
to be where I am.
Where would I find more?
Away from who I am now?
Away from all I have known?
Away from my pain?
Away from your death?
But where could I go
that all of this
would not go with me?
Nowhere, I think
Now if only they’d leave me alone.
When I am ready,
I will find my own way
To move on,
While taking you along
Reprinted with permission from
Grief Digest, Centering Corp.
Omaha Nebraska
402.553.1200
Long time, no blog! Please forgive my random thoughts in this blog tonight, but I had a lot of random thinking!!!
I wish I could blog all day and inform people about all the wonderful things I am learning. At the same time I wish I didn't have to have this website because I wish Ian was here with Scott, Vance, Roxy and I every day. But I have come to the realization that Ian was given to us and put on this earth for a reason. I cannot disturb fate and I must do what my gut tells me to. No matter what anyone says to me I will fight this fight for my children and family until I take my last breath. I think I have said this many times, but it could not be more true.
There are a few exciting things that have happened recently. Vance is crawling! Love it. Everyone warned me how 'tough' it is when your child is mobile, but internally I laugh. Tough is losing your child to the most controversial topic....adverse reaction to a vaccine....I think we can handle some crawling! Tough is dealing with a child with autism...but I digress.
The house selling/buying situation looks like it will be coming together by next week sometime...I will keep everyone posted.
Cancer update is status quo. Things are trending in the right direction. I will be having some more blood work by the end of the month and am hoping for continued good labs. I must say it has been a roller coaster with how I am feeling. When people ask me how I am feeling I want to say GREAT, but for those of you who know me I am brutally honest. I have been feeling ok...up and down. When I am feeling great I will be shouting it from the rooftops. But quite honestly as long as my family is doing well and supporting me I couldn't be happier.
Autism One convention in Chicago is coming up next weekend. I wish I could go the whole weekend but I will only be able to attend Saturday per the house situation. Also I will be attending a fundraiser for a local family whose son Kyle is autistic. It is at the Oak Creek Community Center this Friday the 15th at 6:00. Please stop by and help support Kyle who is trying hard to recover from autism. He has a GREAT Mommy!
If there is any information you would like to see in the newsletter or questions please do not hesitate to contact me. My email address is deanna@iansvoice.org. I am doing this website to bring awareness and help families who want to educate themselves. PLEASE do not hesitate to contact me! I will do what I can to help.
A friend of mine, Carrie, is starting a 'cause' for Ian's website on Facebook. As soon as I have the information I will be sure to post it. Thank you Carrie! I have little intelligence when it comes to the Facebooking, twittering, myspaces, websites, etc. I think I joined twitter tonight but couldn't tell you if it really happened or what I need to do! I think I just want to see what others are doing!
Finally, this is special for me. My sweetheart Ian has been introducing us to so many wonderful people since his life here and since then. Well, it was a HUGE surprise when I found an email from my best friend from grade school, Sarah! She is now a Licensed Professional Counselor in Oregon and owns her own company. Her company is Advanced Behavioral Concepts (http://www.advbehavioralconcepts.com/) and she implements applied behavior analysis principles when working with children. She was doing research for work and she came across Ian's website. I must say we have really challenged each other’s views and had great discussions regarding autism, vaccines, environmental issues, etc. I want to take this time to thank Sarah for our 'conversations' and for keeping me aware of the 'other side'. While we agree to disagree on some things I think it is important to understand both sides of a viewpoint.
I leave with this one last personal thought. It has been driving me crazy lately. Why is it that doctors recognize when children have reactions to a drug. If they take penicillin and get a rash, well then they are diagnosed with an allergy to penicillin. BUT IF the same happens with a vaccine and it is a serious rash and reaction we are told that it CAN'T be the vaccine. WHY? WHY? WHY? Any person with common sense would tell us that the vaccine is a 'drug' and 'foreign' to our body so there CAN be a reaction. Just some food for thought.
I normally have some kind of informational topic/article in each blog, but today I will leave you with a poem that my friend Carrie sent to me. It made my evening.
I closed my eyesand prayed to God today.I asked what makes a Motherand I know I heard Him say,A Mother has a baby.This we know is true.But God can you be a Motherwhen your baby’s not with you?“Yes you can!”, He repliedwith confidence in His voice,“I give many women babies,when they leave is not their choice.“Some I send for a lifetimeand others for a day.And some I send to feel your wombbut there’s no need to stay.I just don’t understand this God,I want my baby here.He took a breath and cleared His throatand then I saw a tear.I wish I could show youwhat your child is doing today.If you could see your child smilewith other children and say,“We go to earth to learn our lessonsof love and life and fear.My Mommy loved me oh so muchI got to come straight here.I feel so lucky to have a Momwho had so much love for meI learned my lesson very quickMy Mommy set me free.I miss my Mommy oh so muchbut I visit her each day.When she goes to sleepon her pillow’s where I lay.I stroke her hair and kiss her cheekand whisper in her ear,Mommy don’t be sad todayI’m your baby and I’m here.“So you see my dear sweet one,your children are OK.Your babies are here in my homeand this is where they’ll stay.They’ll wait for you with meuntil your lesson is through.And on that day that you come homethey’ll be at the gates for you.So now you see what makes a Mother.It’s the feeling in your heart.It’s the love you had so much ofright from the very start.
~unknown~
When Ian's story is posted I will make sure I post it here and it will be added to the website.
All is looking for the Gromowskis....new beginnings on the horizon. With spring here it always brings extra hope!
Hugs to all,
Deanna (and my boys) Some physicians and researchers, even prominent ones, will be quick to argue that there is no such thing as medical or indeed scientific truth.
Hello Everyone,
So I have to admit that I am having a hard time keeping up with website! The feedback is overwhelming….in a really fantastic way. I had no idea that Ian would touch as many lives as he has. Thousands! I am hoping someday it will be millions! I want to thank everyone for all of their beautiful guestbook sign-ins as well as those who choose not to sign the guestbook but contact me directly. The stories have touched my heart in a way you could not even imagine. Unfortunately, it confirms my fear that there are way too many ‘other Ian’s’ out there. It breaks my heart. I also want everyone to know that I read each and every one of the emails we receive and do respond to everyone that contacts me via the “contact us” link. It may take me a month, but I will eventually get to EVERYONE! Also a lot of people ask how sweet lil' Vance is doing and he is fantastic. Healthy as a horse and all he does is smile. I think his big brother Ian had a talk with lil' Vance and said, "Mama and Dada have had a rough time of things, you HAVE to be a good boy or you will have to face your BIG BROTHER!"
I had my best friend, Sarah, from grade school recently contact me via Ian’s website. I have not talked to her since high school (and I am now 32 years old). She is a Behavioral Clinician in Oregon now and she was doing research for work and came across Ian’s website. Ian is getting me in touch with such amazing people and has now connected me with my best friend from grade school…..what a special boy I have. His magic keeps on working! In my emails with Sarah she asked me a question about vaccines and I sent her the below email (and I have added some information) and I thought I would share it because it is important info:
We received 12 vaccines and kids today get 36 with two more to be added this year. It is unthinkable. If parents knew what was really in the shots and the possible side effects they would never vaccinate. The reporting of adverse reactions is done by VAERS and that information is what the CDC uses for their statistics. BUT most doctors believe that kids cannot have a reaction to vaccines (which is absurd) so they do not report it and are not held accountable for not doing so. SO the public doesn't know the true numbers because there it goes unreported.
Ian's neonatologist believed it was the vaccine (she told us 'off the record'). She requested information from the CDC and they sent her a CD that listed for the year of 2006 7 infants died after the Hep B, hundreds of other had life threatening reactions. This is not made public knowledge or reported in mainstream media because it is not 'statistically significant'. BUT when there is one measles outbreak with maybe 30 to 40 individuals and one child dies EVERYONE knows about it and is scolded for not vaccinating. The one child who died of measles is made headline news, but the 7 children who died from ONE VACCINE (not mentioning the 35 others) in one year, they are not statistically significant? It just blows my mind how simple THE TRUTH is, but we parents are labeled 'crazy' and 'uninformed' and 'uneducated'. The problem is we are TOO sane and TOO informed and TOO educated and 'they' do not like that. How can people ignore this simple truth is beyond me. Do people really believe that parents are too dumb (for lack of a better term) to see that their child is developing normally, they get the vaccine, and they regress? It isn’t rocket science, but yet these parents are referred to as ‘liars’ because doctors feel ‘something else’ must have been the cause and the parents just didn’t ‘see it’. Are you kidding me? It is so frustrating.
All of Ian’s doctors kept saying, ‘something insulted his system’, but we can’t figure it out. WHAT!? This is the honest to God’s truth. Here is Ian’s story summed up in 5 sentences:
1. Ian had meconium aspiration at birth.
2. Ian was ready to go home per doctors orders so was given Hep B shot (even though he had a fever the day of and still considered mildly ill).
3. Ian received Hep B shot, no other medication was given or any other treatment per medical records.
4. Ian became fatally ill within hours.
5. Ian died.
How can you not see what insulted his system? These are supposed to be highly educated doctors caring for my son and they wouldn’t even consider the vaccine as the culprit. But per the CDC it indicates it CAN happen. This is SO SIMPLE, why are they ignoring the truth? It is said that when there is a reaction after a vaccine (like Ian's or autism) it is a "coincidence"! Really? What if they had a reaction after an antibiotic, or another drug, or peanut butter........those things would be ruled as one of the culprits. But when it is the vaccine, it is listed as "coincidence". Now I ask, what if this was your child?
If this was your child, would you be content with or even consider the "coincidence" hypothesis from the doctors? NO, now that would be crazy.
Family says court autism ruling is wrong
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Comments
February 13, 2009
By Jane Huh Post-Tribune staff writer
David Troutman sees history repeating itself as parents fight to find the cause of autism.
"Go back to the tobacco industry," said the father of two sons with autism. "This is like déjà-vu."
The U.S. Court of Federal Claims said Thursday that vaccines do not cause autism.
The court said the evidence was overwhelmingly contrary to the parents' claims — and backed years of science that found no risk.
The ruling was awaited by health authorities and families who began presenting evidence in June 2007. More than 5,500 claims, including two from the Troutman family, have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program. The claims are reviewed by special masters serving on the U.S. Court of Claims.
More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests.
The ruling was "a blow. It upset me terribly," said Troutman, a Hobart resident.
Troutman not only believes childhood vaccinations are attributable to the disorder but that proof of that link exists. He sees a parallel between the pharmaceutical industry and the tobacco industry.
"If you go back to the history of the tobacco industry, it's the same stuff we're going through now. If you don't pay attention to history, you're going to follow it."
To win, attorneys for the families had to show that it was more likely than not that the autistic symptoms in the children were directly related to a combination of the measles-mumps-rubella shots and other shots that at the time carried a mercury-containing preservative called thimerosal.
The ruling means that families filing claims based on that theory — potentially thousands — aren't entitled to federal compensation, though they can appeal.
Under the government's vaccine compensation program, awards to the estate in a vaccine-related death are limited to $250,000 plus attorneys' fees and costs. Awards to individuals with an injury judged to be vaccine-related have averaged more than $1 million.
"We're trying to stop this," Troutman said. "This is not about a settlement or becoming rich."
Lisa Fox, local chapter president of the National Autism Association, said Thursday she's heard from several disappointed families who were hopeful and thought "maybe this time, we'll have a victory."
"Parents want answers," Fox said. "They want validation that they're not crazy. They didn't get it today."
Fox said she's not surprised about Thursday's federal ruling, however.
"In any instance where parents try to make it known that there are certain subsets of the population that are sensitive (to vaccinations) it's always shot down."
Contact Jane Huh at 477-6019 or jhuh@post-trib.com. The Associated Press contributed to this article./i
Hello!
The past couple of days have been trying because I am starting to get stronger and feel ‘more normal’ each day BUT I still need to keep my distance from Vance. After Friday I can start interacting with Vance on a more normal basis, but I need to be careful of how I interact with him and I cannot kiss him for another week……talk about heartbreaking!
My results from the doctor are always so frustrating. Nothing can be direct. There are always subjective answers and when you are dealing with your life and CANCER you want straight forward answers. Is that too much to ask? I did find out that the cancer did NOT spread. But they cannot answer if my thyroid area is clear of cancer until the 6 months point. How frustrating.
There is a lot going on right now in the ‘vaccine and autism world’. I have not decided how to comment on these topics/issues as of yet, but I did want to post this article that I found interesting and think you will too. Parents-please pay attention to both sides of the topic, your child's life could count on it!
More tomorrow…..(oh, and I am working on the Newsletter, I promise! We just put our house up for sale and this is an added stress, but we bought this house for Ian and it just isn't the same without him.)
Hugs to all!
The Confidence Gap
Why the Obama administration needs to restore public faith in the safety of childhood vaccines.
Dr. Louis Z. Cooper, Heidi Larson and Dr. Samuel L. Katz
Newsweek Web Exclusive
The mainstream media applauded the U.S. federal "vaccine court"'s decision Feb. 12 that the MMR vaccine and vaccines containing ethyl mercury as a preservative did not cause autism in three children chosen as test cases. But that's not enough to repair the damage already done to the U.S. vaccine program.
It's hard for a single court decision to compete with ongoing allegations from grieving parents and celebrities that vaccines created an epidemic of autism. Those allegations have generated confusion and fear in the minds of many young parents, reduced public trust in the remarkable benefits and safety of U.S. immunization programs and put both vaccinated and unvaccinated children at increased risk from preventable diseases. Furthermore, significant unanswered questions about the safety of vaccines have been documented by the Institute of Medicine and the National Institutes of Health. For example, are some few individuals genetically more susceptible to adverse reactions from certain vaccines? A more common worry among parents is "Are too many vaccines given too soon?"
Parents of newborn infants can't take two years of study, as did the vaccine court, to sort out sound science from junk, innuendo and unsubstantiated allegation. As a result, rates of vaccine refusal have climbed to levels allowing clustered outbreaks of vaccine-preventable diseases such as measles, pertussis and meningitis, posing a threat to those unvaccinated because of medical contraindications, age and parental choice. For example, in Washington, statewide refusal rates now exceed 5 percent, including rates exceeding 15 percent in some counties. Other states show doubling rates. Also worrisome is the disproportionate amount of time pediatricians must now spend to assure fearful parents that vaccination is the best choice for their child. At what level will the growing refusal rates put us at risk of major epidemics?
What has been missing in order to give parents confidence that immunization is one of the best ways to protect the health of their children? Our national failure falls into two categories. First, we've had inadequate ongoing, credible education of the public and health professions from trusted public-health officials concerning the known and unknown benefits and risks of vaccines. Today's parents have little fear of diseases they mistakenly think have been eliminated by vaccines. Second, there's been grossly insufficient investment in research on the safety of immunization. Together, these failures contributed to undermining of public confidence.
This is not the first time parental concern has threatened to deprive our children of the benefits of immunization. In the early 1980s, a spate of lawsuits threatened to drive vaccinemakers and doctors out of the immunization business. Then three highly polarized groups—parents who believed vaccines injured their children, vaccine companies and pediatricians—collaborated to create the National Childhood Vaccine Injury Act of 1986 (NCVIA). That law, a pragmatic, compromise solution, saved a then-fragile U.S. immunization effort. It offered financial relief to vaccine-injured children, prevented the demise of a vaccine industry that had dwindled rapidly from 26 to four companies and protected pediatricians whose careers then were being jeopardized by malpractice suits, even though they were properly administering vaccines. Over the past two decades, that law has distributed $1.8 billion with financial compensation to more than 2,200 families and individuals, encouraged dramatic expansion of the vaccine industry and allowed pediatricians to remain the mainstay of our successful immunization program.
The vaccine injury act put the secretary of the Department of Health and Human Services (HHS) in charge of planning and monitoring the effectiveness and safety of our national immunization program. There's plenty of financial incentive for industry, venture capitalists, government agencies, clinicians and the academic community to develop and distribute vaccines. In contrast, without federal government investment, no such incentives are available to support research on vaccine safety.
The responsibility for development, licensing, purchase, distribution and monitoring of vaccines is divided among a handful of federal agencies. Because of the wide range of scientific skills needed to study the safety of vaccines, we need a coordinated plan with funds to match. But no such plan has ever been put in effect. (In the last few months of his tenure under President George W. Bush, HHS Secretary Michael Leavitt did make some progress, but the effort was unfunded, incomplete and hampered by his short, lame-duck status.)
What remains to be done? The incoming secretary of HHS, with the backing of the White House, must carry out aggressively the duties assigned by the 1986 law: development and implementation of a national vaccine plan that includes adequate funds for communication and vaccine-safety research. Given the current distrust of government, development and accountability for the plan deserves serious, transparent input, not just by scientists but also by more than token participation of the public. It is that public whose trust has been eroded.
As parents, grandparents and health professionals, we know how immunization has revolutionized child health. But to maintain that progress, we must restore public trust in vaccinations. Ignoring public anxiety about childhood vaccines—and the increase in parents who skip or stretch out immunizations—risks even more serious outbreaks of vaccine-preventable diseases. We need visible leadership from the incoming secretary of HHS, supported by President Obama. The new public-health team must describe clearly the known benefits and risks of vaccines—and take into account safety issues as perceived by the public and scientific community. We know the new administration has a long list of problems to confront, but there are few issues more urgent than the health of our children. We hope they act quickly.
Dr. Louis Z. Cooper is professor emeritus of pediatrics at Columbia University and a former president of the American Academy of Pediatrics (AAP). Heidi Larson is an associate research professor at Clark University and a research associate at the Harvard Center for Population and Development Studies. Dr. Samuel L. Katz is the W. C. Davison Professor & chair emeritus of the department of pediatrics at Duke University School of Medicine and a former chair of the Advisory Committee on Immunization Practice at the CDC and former chair of the AAP's Committee on Infectious Diseases.
URL: http://www.newsweek.com/id/185986
I have included another article that I feel is VERY important. It goes to show the the FDA can make mistakes.....scary when it comes to the health of our children.
Sleep well.
Feb 16, 2009
CHICAGO (AFP) — Tainted food outbreaks like the deadly melamine discovered in Chinese infant formula will happen again and there is not much that regulators can do about it, safety experts warned on Monday.
That's because there are so many different ways for a tainted product to enter the food chain and so few inspectors available to guard against either deliberate or accidental contamination.
"I do stay awake at night worrying about what's the next melamine," said Steve Solomon, deputy director of regional operations for the US Food and Drug Administration.
Counterfeiting is a major problem in the global food industry with the level of fraud estimated at around 50 billion dollars a year, said John Spink of Michigan State University's Food Safety Policy Center.
That's just shy of 10 percent of the total estimated trade in counterfeit goods and is likely to increase as food prices rise.
While some of that trade poses little or no health risk -- like falsely labeling food as organic or substituting tilapia for a more expensive type of fish -- adulteration can be deadly.
When protein supplements are watered down, "babies starve to death of malnutrition while their bellies are full of milk," he said.
Another example is when low-grade heating oil taints the grain it is drying and cattle carry the chemicals on to the consumer.
"If you think of about the bad guys, their goal is to make more money," Spink told a meeting of the American Association for the Advancement of Science.
"They're not aware of, or they're not considering the implications of, what they do."
While better regulations and inspection systems are needed in countries like China, recent deaths due to tainted peanuts which a US company knowingly shipped to consumers shows that even the best systems cannot catch every criminal, Spink said.
"Monitoring all food manufacturing is not practical," Spink said.
"The problem and the solution is all about profit."
Crack-downs on counterfeiters will lower the profit incentive, while producers and exporting countries will respond with better standards after seeing their business collapse in the wake of health scares, he said.
But inadvertent contamination is impossible to prevent even in the most responsible companies, warned Joseph Scimeca, director of global regulatory affairs for food giant Cargill.
"Accidents will happen," Scimeca said.
The genetic modification of plants for use in pharmaceuticals and industry also threatens to contaminate the food supply with unapproved substances, he noted.
The problem from a food safety perspective is the sheer scale of modern food production: a single shipment of high fructose corn syrup can go into two million cans of soda, he said.
While the ability to detect harmful substances in food is "getting better by leaps and bounds," Scimeca said food safety "must depend on a preventative system designed to keep hazards out of food not test for them."
Nearly 10 million shipments of imported food enter the United States every year, which represents about 15 percent of the nation's food supply.
Only one percent is inspected and 0.3 percent is sampled or tested.
"We can't inspect everything," said Solomon of the FDA. "We need to focus on the highest risks."
The FDA is developing a system to better diagnose which shipments pose the most risk and has begun sending inspectors out to overseas facilities.
It is also setting up offices in China, India, the Middle East and Europe help establish better standards and develop a global rapid alert system for when the next outbreak hits, Solomon said. 9:31 PM GMT | Read comments(0)