Saturday, April 16, 2011

Last call for Team Squeaker 2011!

Do you want to help ensure fewer babies have to start their lives like this?

Do you want to see that same little baby cross the finish line on his own two feet for the first time?

Join Bryce, ^Chloe^, friends and family this May Day for the 2011 March for Babies! Thank you to the many past supporters who have already committed to the walk or a donation for this year. If you're still on the fence, here are seven great reasons to participate:

1. History of Good Works: With the money raised last year, March of Dimes was able to provide comfort and information to thousands more families with a baby in newborn intensive care. And your March for Babies funds paid for 40 current and six new research grants to help understand and prevent premature birth.

2. Cost: There is no cost to join us for the walk on May 1st. You do not need to donate or fundraise to participate. If money is tight right now, show your support by coming out and walking with us! If you want to make a nominal contribution, March of Dimes considers a "paid" walker (covers their costs) to be anyone who contributes or raises $10 or more.

3. Location: Team Squeaker will be participating in the St. Paul walk at the same great location (Phalen Park) as last year! (

4. Food: March of Dimes will be providing some food for the walkers, and we'll be hosting a potluck-style lunch for Team Squeaker walkers after the event!

5. Swag: March of Dimes provides t-shirts ($200), sweatshirts/Twins tickets ($1000) and other incentives to top fundraisers. Bryce will also be handing out tokens of appreciation to Team Squeaker supporters who raise or donate $50 or more.

6. Weather: The walk is a week later this year, so hopefully we won't be subjected to the cool temperatures and stiff winds of last year!

7. A Great Cause: Most importantly, we walk to honor Bryce, Chloe and all of the other children/angels who didn't even get to experience life before they had to fight to keep it. I'm not a fan of fundraising or being the center of attention, but if my efforts keep even one baby out of the NICU, it's worth it. I hope you agree.

Sign up or donate today! :

Sunday, April 3, 2011

Laugh, cry, or cheer?

I ought to have learned to expect the unexpected from Bryce by now, but when I heard the urgent plea to "come quick and look at Bryce", I never would have guessed that I'd find my 18-month-old son administering his own nebulizer treatment.

Walk? Pretty darn good. Talk? Not yet. Keep food off the floor while eating? Not a chance. Sit still and breathe steroids through a mask for 3 minutes? No problem.

He never ceases to amaze.

Friday, April 1, 2011

Major Drama in Preemie-land

Not with Bryce, thankfully -- our little squeaker is doing fantastic. We enjoyed a healthy spell from mid-February to mid-March, and when he did catch a cold near the end of March he weathered it better than Logan! He's got nearly a full mouth of teeth and a good appetite to go with them. His speech has regressed over the past six weeks to the point where we rarely get more than a whine or a cry these days, but considering how well he's doing in all other areas (including receptive language), we're confident that he'll talk when he's ready. Finally, we're gearing up for the 2011 March for Babies on May 1st : if you'd like to enjoy a walk in the park for a great cause, please join us!

The drama that I'm referring to centers around a little shot known as 17P. This drug, which is provided to women with a history of premature labor, has helped many carry subsequent babies to term. The shot, which must be given weekly from about 17 weeks onward, was available from many "compounding pharmacies" at a cost of about $10 per shot.

In swoops KV Pharmaceuticals. With the support of the FDA and the March of Dimes, KV Pharmaceuticals won the right to become the exclusive provider of 17P, which they rebranded Makena. Why? To ensure a "standard concentration" of all 17P. As soon as their exclusive rights were announced, KV Pharmaceuticals promptly sent cease and desist notices to all other manufacturers and announced that they would be raising the price to $1500 per shot. No, that is not a typo -- $1500 per shot.

Naturally, the community of preemie parents has been in an uproar. The increase in price will inevitably make it much more difficult to get insurers to pay for the drug, because a treatment that once cost $200, and had the potential to prevent the average $50,000 cost of premature birth, now costs $30,000. Even those insurers that will still cover it will be forced to pay an outrageous premium for the privilege of filling the coffers of KV Pharmaceuticals.

The March of Dimes response was tepid at first, but thanks in no small part to some heartfelt and thoughtful appeals from other preemie parents (e.g, here), I'm somewhat mollified to see that the March of Dimes terminated their relationship with KV Pharmaceuticals (a million $+ sponsor) effective today. Furthermore, I was tickled pink to see that the FDA effectively flipped the bird to KV Pharmaceuticals when they announced on Wednesday that they have no intention of enforcing the exclusivity rights of KV Pharmaceuticals.

Score one for the good guys.

UPDATE: Makena hits the mainstream news.