The power of social media?

So, if you've been reading my blog in the recent weeks, then you've seen my absolute outrage over the exorbitant and blatantly money grabbing price increase in the recently approved FDA drug, Makena. You also probably realize that a part of my outrage is because I was to be given this protocol should I ever have any more children, due to the sudden, unexplained premature birth of my first daughter. So I was the definition of the target group of mothers who would need this protocol.

Well, today was a good day in this world. Today, the FDA announced that they would not stop compounding pharmacies from continuing to produce the 17P protocol. Effectively removing the "exclusivity" of the Makena brand.

I've been astounded, honestly, by the backlash I witnessed on social media when the news of this first broke. I mean, I know I'm a bit biased in that it directly affects me, and that my main circle of friends in social media are also preemie moms. So it only makes sense that this news would light up the walls of my friends. And I'm not even certain really how I found the facebook group set up to fight this price increase. But I did. And I'm ever so glad I joined. Because I've gained so much ammunition against KV through the community that built up around this group. It's been loads of fun!

And just today, they were credited with helping to drop the stock prices of KV.

http://creationhealthcare.com/articles/shame-on-you-crisis-kv/

I LOVE it! KV is getting the proverbial kick where it counts backlash and it all seems to have started through the social media. National news outlets are even picking this up and prematurity is on the national stage. Kinda sad that it took a price gouging to get it there, but there it is. And I guess I'll take it.

So for reference, here is the MOD's statement and the FDA's on the announcement today regarding KV and Makena. KV is saying they will have a statement later this week. Wonder what it will be? Oh, maybe we'll raise the price to only $50 a dose? At least that's a much more reasonable, if unnecessary, increase.

FDA - http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm249025.htm
MOD - http://www.marchofdimes.com/mar30b_2011.html

Oh, and if you are interested in checking out the facebook page, search for "Shame on you, KV Pharmaceutical and CEO Greg Divis." It's also kinda funny that at one point, if you googled Greg Divis, this page showed up in the top 10 hits. :-D

I taught Mommy a lesson

See, my mommy is crazy. She's what's known as a type A personality and everything and I mean EVERYTHING has it's own SPECIAL place. I mean, my silly mommy has been known to come into my room at night and make sure I'm sleeping in my bed right. And if I'm not she "fixes" me. I mean, come on mommy, how do you sleep in a bed wrong!!!

So tonight, Mommy asked me to pick up my toys like she does every night. And tonight, I decided to show her I could. So she hands me my pinwheel and tells me to put it away. But mommy wanted me to put it in my toy box. So instead, I put it in my toy cabinet. When mommy turned around to tell me, again, to put it away, she was very surprised to see me closing the cabinet with my toy inside.

:)

Then mommy laughed. See, she realized that I DID put it away. It might not have been where she would have put it, but it WAS away. So she gave me my other toys, and I put them in my toy cabinet also.

Mommy gave me a big hug. She was very proud of me for putting my toys away. :)

My big trip

I got to take a plane ride last week and it wasn't my birthday! No, it wasn't even CLOSE to my birthday. But mommy had to go on a work trip and she brought daddy and I with. Mommy and Daddy woke me up REALLY early on Monday morning. I didn't really understand what was going on but I went along quietly. They left me in my pj's until we got to the airport. And then, we got on a PLANE!



Now, I know this wasn't my first plane ride. I was really WAY too little to remember my first one. But this was my first one that I really sorta knew something was going on. And it was WAYYY fun! I really liked watching things out the window. The world looked really cool from way up high!

And, mommy and daddy helped to keep me entertained. Our seat mate looked worried when he first walked down the aisle to see little me in the row with him but I was a good girl.



I watched Nemo on Daddy's computer. It was my first time seeing it and I really liked the fishy on the screen. They were silly. But not like daddy's fishy at home.

And then we were there! And daddy took me swimming, and to the toy store and the pet store. And I even got to go to mommy's work and see a lot of her co-workers. Mommy and Daddy even took me to see mommy's friend Sadie. She was little like me and I really like meeting people my size. We went to Chuckie Cheese's and I got to play lots of video games with my daddy.



I also got to see a really cool play area before going back to the airport to go home. I climbed wayyyyy up high!



We've been home for a few days and I'm a bit cranky, but mommy thinks that molar is finally working it's way up. It's been playing at coming in for a while. She hopes I'm not getting sick from my plane ride. I've even earned my first ever time out because I've been so cranky and out of sorts. :( Hopefully tomorrow I'll feel better and rested from my exciting week, it really was a fun time! I know mommy really appreciated us coming with her.

Wordless Wednesday

Pricey drug that prevents preterm delivery angers patients and doctors - NBCActionNews.com - Kansas City

Pricey drug that prevents preterm delivery angers patients and doctors - NBCActionNews.com - Kansas City

I saw this last night on the 10 pm news. I wish I wouldn't have because it made falling asleep very difficult.

What angered me? Well, KV Pharma's justification for the price hike. I quote from the story, "The manufacturer says the cost is justified to avoid the mental and physical disabilities linked to prematurity and promises that every woman who needs the drug will get it through the company's patient assistance program."

Nothing justifies a price hike of this nature. When a drug is already developed and available. This, to me, says one thing. That KV Pharma is taking advantage of scared mothers and innocent babies in an attempt to line their pockets. Because they figure, rightly so, that a mother in imminent danger of delivering prematurely will do anything humanly possible to avoid delivering at that moment. Shoot. I would have hung upside down by my toenails for the remaining 14 weeks of my pregnancy if that would have kept her in.

That statement is not a justification for a price increase. It is a justification for developing and bringing a drug of that nature to market. Since KV Pharma did NEITHER, it is a slap in the face to me.

Wordless Wednesday

I knew this day would come

Can I baby proof the baby? I thought that I would need more eyes when she started walking. This event came about because I moved something she wanted up onto the railing, assuming incorrectly, that it would deter her and have her move on.

Yup. I was wrong. Not two seconds after I walked away I looked back to the image of her getting her knees onto the cooler and then up she went.

All I can say is "Oh, dear."

I'm not sure I'm ready for this. I don't know if my heart will ever get out of my throat.

A little faith...or a little hope.

A question that has recently been brought up during our weekly church services was "what is the difference between faith and hope?" And going even further, what does the role of hope and/or faith play in whatever it is that makes you feel alive?

I couldn't really answer it but for my experience with Elisa. I hoped for a healthy pregnancy with a healthy baby in the end. When things spiraled out of control and I did NOT get a healthy pregnancy and I didn't think I would get the healthy baby, it was my faith that kept me from loosing everything and helped me keep putting one foot in front of the other. Even when the pregnancy ended abruptly and I was left with a baby that we had no idea what sort of quality of life she would have, that faith still kept me going forward. Even a little bit of hope, that despite the circumstances she would thrive. I think both have vital roles in making a person feel alive. A life with out hope is, well, not truly living. And while you can live with out faith, it's not a life I would want to live, because what else do I have to fall back on when the things I hope for don't materialize?

I've tried many times to put into words what the experience of Elisa's birth felt like. It's truly hard to explain how something that is to be your greatest moment, is in fact your worst. And while, I've not been able to adequately do so...I have met someone who has. Michelle is a mom of another 29 weeker. Born one day (if I remember!) before Elisa. So I've kind of followed her story as well as that of her son, Liam's, closely.

http://weird-bird.com/2011/03/11/a-little-faith/

"There is no way to redeem the circumstances surrounding Liam Eliot’s birth, to turn them into something beautiful. If anything, I wish I could make them disappear."





If anything, I wish I could make them disappear.

Going forward, these experiences will always color our perceptions.

But I have faith. Faith in God who got me through it all. I am still standing. And hope. Hope, that should there be a next time, things will go "as planned." Hope, that although the memories will never disappear, the sting they bring will fade into nothingness. Because, honestly, the sight of these pictures still, to do this day, bring tears to my eyes.

They are quickly replaced by tears of joy when I see her, happy, healthy and her precocious self run by me.

This time, I got most of what I hoped for.



A healthy baby.

Utterly disgusting

Normally, I stay out of any thing political. I just get sick and tired of all the bickering and all the point of fingers. Lets be honest, we all played a part of where we are currently, regardless of your political stance.

But never has something hit so close to home.

The drug that I was placing a lot of hope in should we ever decide to have another child now costs more than gold per dose. Yup. More than gold. It went from $10 a dose to $1500 a dose.

And why, you ask? Well, from everything I'm seeing and reading, it's for the simple desire of KV Pharmaceuticals to make money. And lots of it. Where am I getting this idea? Well, a popular blog for preemie moms is The Preemie Primer and she posted what she found. She states:

"But KV Pharmaceuticals didn’t spend a dime on getting 17P to market (okay, maybe they spent a few bucks photocopying their application and getting their lawyers to review the paperwork), but you and I paid for the pivotal research because it was funded by the NICHD (National Institute of Child and Health Development). In addition, 17P is already recommended by the American Congress of OB/GYN, so they don’t need to do any marketing. All KV Pharmaceuticals has to do is get their factory up and running and do some post marketing studies. They are laughing all the way to the bank. To protect this gold mine, the Associated Press is reporting that KV Pharmaceuticals has already sent cease and desist letters to several compounding pharmacies."

This has been all ablaze on facebook today among my close group of preemie moms. We are all outraged. Some, who are currently pregnant after having a preemie and were prescribed this drug have called their OB's and insurance companies to find out that they are now denying the claims for this protocol calling it "experimental."

KV Pharmaceuticals is trying to defend itself and say that they have an assistance program in place for those making less than 100k. Well, ok you say. That would cover me, but that's not the point. How can a drug that was already produced, tested, marketed and now only needs to have the production process streamlined so as to increase quality control possibly require over a 15000% increase?!?

It's not that there aren't other options out there. There are. I could just wait until I'm in active labor and then end up admitted to the hospital again on bed rest. On a mag drip. Getting regular doses of terbutilene. Ending up with gestational diabetes. It kept me pregnant for 3 extra weeks last time. That made all the difference. But honestly, I'd rather try to avoid that. My other option? To never have any more kids that I carry myself.



I never want to see this again for either myself or anyone! Especially if it could have been prevented by having affordable access to reliable healthcare!

My baby

is growing up. Way too fast.

It seems like just yesterday she was so tiny she barely stretched from my shoulder to my waist. I was counting everything in ounces and she spent most of her time either sleeping or in tummy time.

Now...now she seems to have lost all those "baby" qualities. She's well and truly into "toddlerhood."



She's approaching that ever so great stage of the "terrible two's" and has been giving me glimpses into that. She's always been opinionated and now realizes the best way to really frustrate mommy is to be opinionated about her food. She refuses her high chair at times, tosses her food on the floor if it's not what she wants or given to her in her "preferred" manner. She screams when she doesn't get the toy (which really ISN'T a toy, more like my phone or some other dangerous object like the knives from the dishwasher) she wants, she climbs into the dishwasher.

She is attempting to climb onto the couch to be with me. She moves objects, like her chair or a pillow, and tries to use it as a step stool. She's intensely curious and points at everything and says "nah?" She's working on her "y" sound and makes the most hilarious sound as she moves her tongue around her mouth. She loves to be read to right before her bath and points at objects in the book and names them. She has the cutest little voice and some day I will get it on video as she points precisely to her nose and says "noe" in her adorable voice.



She's sitting at the table with Andrew and I. We recently went and got her a booster/high chair from Wal-Mart that allows her to really be a "big girl." We've packed up the high chair and stored it for any possible future use. It's like saying good bye to an old and faithful friend. But at the same time it brought such a unique joy to look over and see her literally AT the table with us.

But I guess all this "big girl-ness" has it's benefits. For one, she now walks up to me and says clearly "ma-ma." When she wants something, she will call out "ma-ma!" It's not just a random sound anymore, she is clearly looking for me. She walks up to us for just hugs at times. I still can just look at her and she grins shyly before breaking out into her beautiful smile and giggling.

I can't believe we are 16 months old. I can't believe we are walking, no running. I can't believe we are here, now. It doesn't seem real. And I wish I could just capture it and live in this moment, here, now. Because I know when I blink, 10 years will have passed. And then 10 more.

Every thing we went through to get here has been worth it. Every last thing.