Tuesday, July 28, 2009

Validation

I have Monet signed up to get a few of the remaining vaccines this month. She's already had the ones I strongly object to, like the Flu Shot, Chicken Pox, and Hep B when she was a baby. But there are a couple she is missing that I think she ought to get.

However, she is getting one at a time and she'll start school before she gets them all. So I had to go down to the Health Department to get my immunization waiver forms.

If you've ever had to do that, you can attest that the nurses, or doctors, whoever it is that administers the vaccines, are not too happy about the waivers.

I explained that I wanted to get the MMR spaced a bit for my daughter since my son developed ITP, a bleeding disorder, after the MMR shot, and there might be a genetic issue involved.

Her reaction?

I quote, "Well I don't think it was related."

Thank you very much Mrs. Johnson. You just confirmed to me what I already knew. The people administering vaccines have their blinders on.

I let her know that ITP was listed under Thrombocytopenic Purpura on the U.S. Government's own Vaccine Injury Table, and yes, it absolutely is connected causally with the MMR vaccine. This is listed in the package insert as well.

Mrs. I-administer-thousands-of-vaccinations-per-year-and-I-don't-even-know-the-side-effects had me repeat "Vaccine Injury Table" several times. She'd never heard of it, and wanted to know where I got my information. (um, that would be http://www.hrsa.gov/ you should be familiar with that one)

Sad. So the assumption is that vaccines do nothing but good, and anyone who claims their child has had a reaction is full of crap.

Well, this may be why the message is not getting to the lower ranks. Here is a partial transcript from the Vaccine Injury Compensation Program Board Meeting. I thought it was interesting. Some were explaining that a lot of people don't even know about the existence of the fund (Even the nurses at the county health dept apparently.) The Vaccine Injury Compensation Program was created to help those who were injured by vaccines pay for their medical care. Or in cases of death, they pay a sum of up to $250,000 to the child's estate. The burden of proof is on the person making the claim, and there are a lot of restrictions. The table lists the illnesses and diseases that vaccines are known to cause. There are other issues as well that may qualify, but these are the "easy" ones to prove since there is a body of evidence supporting causation. The fund was created so that people could not sue the drug companies creating the vaccines for their injuries. The money in the fund comes from a tax on every vaccine sold.

This was one snippet of the Vaccine Injury Compensation Fund Board Meeting where one of the members was describing why an awareness campaign of the injury fund wouldn't be successful:

“Whether it is a national effort or a county effort, people [in this case, the nurses] talking about the importance of immunizations and saying at the same time, “oh by the way, there are adverse events. you can be injured, but you will be paid for it." It is a difficult message to put across effectively, and people in the front lines communicating don’t exactly seek us out.”


I loved the response from the board member who basically stated exactly how I feel. I'll paraphrase since it is kinda long to retype:


After every pharmaceutical commercial, you hear the disclaimers. The nasal spray that could potentially cause cancer. You can even have an adverse event from Tylenol. People will take it if they need it. "I feel that with you guys not advertising it, it is hiding the fact that people can get hurt from these vaccines. They can hurt. They can kill. But we will take care of you."


That statement right there really validated me. It frustrates me when people refuse to acknowledge or admit that vaccines, though beneficial, can sometimes cause problems. It is a slap in the face to the kids who actually did sacrifice their health, and in some cases, their lives, for the immunization program and the community heath effort. It is horribly frustrating to then deny these people any kind of condolence because of their flawed assumption that vaccinations don't cuase harm. It makes these parents feel labelled and rejected in addition to being stressed and upset about their child's injury.

Most concerning is that when a health professional refuses to admit that some conditions are caused by vaccines, they don't report them. And when they don't report them, we don't have proper statistics and the doctors who analyze the program and make changes as necessary can't effectively do their jobs. It was nice to read the transcript, because it reaffirmed to me that these people creating these programs are a diverse group of good people who care. However, I think people do tend to have a bias when it comes to their jobs. They want to feel important, and like what they are doing is right and good. And I think sometimes, they ignore problems that threaten that feeling. Hence the reason Miles's pediatrician did not want to admit that he developed a problem from his immunization, despite all the evidence lining up.

A few things that would help me not feel a pit in my stomach every time one of my kids gets a vaccination:

1. More awareness by professionals administering the vaccines so they can tell parents what to look for so the children aren't put in dangerous situations. In Miles's case, he had extremely low platelets for several days before being diagnosed. I had no idea that bruising signified a reaction to an immunization or a bleeding disorder. So when Miles tripped on a stair I gave him a kiss and helped him up. Only later did I find the huge hematoma on his head. With his platelets as low as they were, brain bleeds are a big concern and that was pretty dangerous for me to be unaware that a fall like that could kill him. I would have liked to have a heads up to bring him in he develops unusual bruising.

2. I would love to see better literature that isn't biased regarding the harm that vaccines can do. I think parents ought to make an informed decision, and downplaying the risks isn't allowing them to do that. Most of us will still choose to vaccinate. But I don't think information should be withheld to induce people to vaccinate, and I've seen that happening over and over again. I like to know both sides of everything so that I can make a solid choice. I hate that there are people out there that seek to make a choice for me by offering information that isn't the whole truth.

3. Better reporting of adverse events would make me a lot more comfortable. I think a doctor reporting an adverse event holds more weight, and should be mandatory when any patient develops a condition that COULD have been caused by a vaccine. Vaccines are tested on relatively small populations and often the true side effects are unnoticed until millions of kids are vaccinated. If a child develops ITP, Encephalopathy, arthritis, brachial neuritis, or any other condition listed on the vaccine injury table within a specific timeframe, I think the pediatrician should be required to report it. But I think other injuries that are suspected to be vaccine caused or related should also get reported so that if there are enough complaints, someone can start an investigation, research study, etc.

4. Long term research proving that vaccines are safe, not just in the few days following vaccination, but in the months and years to come. There is a huge need for studies that actually follow vaccinated and unvaccinated kids through the years. What are the rates of disease in general? Do the vaccinated kids have higher rates of autoimmune problems? Could vaccines be eliminating one disease, and causing other chronic diseases? I'd like there to be more follow-up. While we feel so relieved that vaccines have eradicated many diseases, I'd like more information on the causes of the auto-immune disorders that have skyrocketed.

I doubt I'll ever not feel totally at ease when getting my kids vaccinated. There will always be risks involved. But I do appreciate the role that vaccines have played in helping to eliminate disease worldwide and want to see continued safety and improvement of the program. Seeing the risks minimized would be reassuring.

Monday, July 20, 2009

Not afraid of heights anymore!


So Monet has always been such a cautious girl. When she was a baby, she did not like being tossed up in the air, or swung around. She hated water. She was sooooo easy to look after because she was very careful and obedient. If we went to the park, she stayed right by my side.

I think this caused me to be very judgemental. I was pretty sure her obediance was because we were such fabulous parents. lol. And I kinda wondered about all those moms whose kids were wandering around.

Never do that because Heavenly Father likes to humble moms who start thinking that way. He sent me Miles then Simone, and well, let's just say I can hardly keep clothes on her, let alone keep her inside the house. It gets tough when the big kids are going in and out all day.

Anyway, Monet was a little fearful of anything that seemed reckless. But look at her now! She scaled the post like it was nothing, walked across a log, then jumped off the platform. She was very eager to prove how brave she is.

We all did it, except for Simone. And she wanted to. Miles got pretty nervous about hanging out in mid air.





We had so much fun up at the Heber Valley Girls Camp this weekend. Our friends the Milne's had a family reunion and had some extra space. It was so cool! The animals were everywhere and my kids were going nuts because the deer didn't even run away. They were just hanging out in our campsite. They must have known it was dedicated land. Anyway, we got to go do this cool zip line, some great challenging games, and we even went out on the paddleboats. Our kids were so excited to sleep in the bunkhouse with us. It was a fun overnighter. See the young buck in the middle of those trees? He was hanging out for a good twenty minutes while the kids were all walking around and looking at him.

Tuesday, July 14, 2009

If you are also missing Jay Leno's headlines. . .

While Jared has quickly converted to watching Conan, I on the other hand am really missing Jay's headlines.

So here is one for you. Miles is doing a reading program created by the Waterford Institute where he has to play 15 minutes of reading computer games per day as part of some research they are doing. Last month, he got this from the program:

Wow, thanks for the "Silver Metal." I sure am glad you are all teaching my kid to reed. Lol.


Okay, really I love the program and he loves to do it. So I am very happy. Just made me laugh.

Thursday, July 09, 2009

The much anticipated tooth!

Monet has finally lost her first tooth! She's waited patiently while every other kid in her class at school lost theirs. I told her it might be awhile since her teeth came in late. And finally that little tooth came out.

I pushed it back and forth, and finally did a little twisting. I am sure it hurt like crazy, but she was so brave. She was as determined as I was to get it out!

Finally, it popped. She had a sleepover with her cousin that night, and the tooth fairy even knew where to find her AND let her keep her tooth!

Our Enterprising Fourth of July Tradition
















What better way to celebrate the land of opportunity than with a little enterprise?

We started a tradition of selling glowstuff at fireworks shows years ago when Jared and his brother were doing eGlow.com. At first it was purely a great way to make some extra money and I have to admit I somewhat dreaded having my husband working so hard all that week. But as our kids have grown, they now see the event as super fun--like a big lemonade stand. It has become a full-fledged family tradition. Our families have joined us for most years, making it really fun for me and the kids while Jared is in the booth. Elise was fantastic and helped so much in the booth this year. She was helped all the customers for almost a full hour. Monet can't wait until she is old enough to go with daddy in the morning and stay all day. And Miles--he was great at hoarding the light sabers. He was sure proud that HIS dad was the one with all the cool stuff. We thought that was hilarious.

Each year is a lot of work, but the fun lasts for days. The kids are especially excited about counting the money afterwards--and I am impressed with their accuracy!

Monet was really excited about the snakes she got to hold (seven different ones) and wanted me to put them on the blog. She was very brave!

When I was eighteen I taught English in Voronezh, Russia for about five months. While I was there, they celebrated Victory Day and lit up fireworks over the Volga River. Having the experience of living in that country made me so much more aware of the opportunities that we have here in the United States, and I don't think I've ever felt a love for my country as I did when seeing the fireworks in Russia. Fireworks shows have never been the same since. It is especially fun to watch them now, and see the look on my kids' faces. They love them too.

Wednesday, July 01, 2009

Wasatch Back Ragnar Relay 2009



Wasatch Back Ragnar Relay 2009

I wasn’t sure that I’d do this race again after how hard it was last year. But my team had some people drop out, and I was happy to fill in. I am really glad I gave it another shot! I can see why this is becoming such a popular race, and I’d love to do another relay. I wasn’t sure how I liked the format last year, but I think the key is to have really low expectations. This year, I was expecting to get no sleep, be super cranky, and to be sick. I was pleasantly surprised when I felt pretty good. We even went shopping after the race. Last year, all I wanted to do was crawl into some dark quiet place and go to bed. We had two full teams this year, and with drivers that is 26 women! It was a total party.

I was runner 6 in Van 1 this year. My first leg was up a mile, then a steep downhill of about four miles before it flattened out for the last two. It was a really pretty run. It was fun to let go on the downhill. I was a little nervous about my quads getting sore, but it went well, and though I could feel the burn at the end, I felt pretty good considering.
Avon Pass was full of sunflowers and was all new to me. I loved watching all the girls in our van run through Hyrum and the south end of Logan. It was such a scenic course! I got some huge blisters that were really painful.

We had all afternoon to hang out at Snowbasin before heading out again on our second round. My second leg was at about 10 pm and I really don’t know much of where I was since it was very dark out. It was an eight mile climb, and I felt pretty good. I was slower than I’d wanted to be, but my sides were hurting and it would get worse the faster I went. Toward the end I stopped to walk for a few seconds when another lady caught up to me. I loved the camaraderie that we shared from the race. We were all cheering each other on and competing in a sense at the same time. She and I kinda leapfrogged a bit. Then a big group of ladies were walking up one of the big hills and I stopped to listen to their chatter before turning it up again. For a few miles I was on my own. I didn’t have anyone around for a long time and it kinda made me nervous. But it was nice at the same time. I love running in the dark. It was nice to be away from my family for a few days. Funny how when I am gone, all I can think about is how much I love them and miss them. Totally makes me appreciative.

We headed to sleep at a cabin in Midway for a few hours. All of us were happy to get a hot shower and a few hours of sleep before our morning runs. I felt great when I started that last leg. It was an easy three mile flat on the map, but it was really a gentle downhill and it rained lightly. I felt sorry for Van 2 who had heavy rain, hail, and cold weather for their last several hours. After over 18 total miles, my legs were shot and my blisters huge. It was a great feeling to be done with my part. At the end of the race, the two vans meet at the finish line in Park City and everyone joins the last runner from their team and run into the finish line together. It was so fun.

Highlights of the race:
--Spending some time with my friends! I don’t think there could be a better girls’ weekend. I loved all the girls that we were with, and it was so fun to get to know all the fun girls in our van better. Spending those miserable race moments together is totally bonding.
--Food! I think I ate enough to last me a few weeks—in fact, I think I just grew a spare tire
--Beautiful scenery—I think the pioneers chose the wrong side of the Wasatch Mtns
I got two cool new shirts. Yay, my other ones are really stinky.

Lake Mary Hike


We haven't hiked Lake Mary as a family in years. So we decided it was time for the younger kids to see what it was all about. It is up at Brighton and one year there was snow until the end of July. There were still quite a few patches. There weren't a lot of wildflowers yet. A few more weeks and it is going to be gorgeous. We didn't get to Brighton until 7. So it was a little chilly. The kids started getting tired and cold at the end. Simone said "Mommy, let's NOT do this again." and Miles agreed. I think they'll feel differently when we have more time and we get to spend some time at the top checking out the fish. We showed them our secret cache in one of the Granite rocks and they thought that was very cool.

Seven Peaks






We've have had a couple of non-rainy days in June! We had a great time at Seven Peaks the other day. Simone and Miles loved the slides. I think I heard "let's do it again mommy!" many times. The kids had a great time with their friends.

Monet was so excited when Elijah moved in down the street. She loves having a buddy that is so close.