Sunday, July 21, 2013

12 month checkup and other loose ends

We've been busy around here, fighting off colds and getting the babies to random doctors appointments. We also have a big announcement but that will come in a bit. 

On Monday James had a followup Neurosurgery appointment that went well and we also got a tour of the new NICU at PSL. We are very jealous - but extremely happy for all of our friends down there. The hospital has an amazing state-of-the-art unit where they can fully care for the most fragile preemies and it is beyond incredible. We also ran into our NICU best friends Jen and Lily, in addition to many of our nurses and doctors. 

On Tuesday the little dragons had their 12 month checkup with Dr Jim, who is thrilled with their progress and says they are doing fantastic. They did, however, give Dr Jim quite the screaming match about birthday neurosurgery - which apparently they are still ranting and raving about. If there's one thing to be certain about - these little dragons do not lack verbal skills. 

Maisie: 15lbs 12oz, 26.25 inches long
James: 14lbs 5.6oz, 26.25 inches long

The rest of the week was pretty uneventful, with a few exceptions. Maisie learned to say "bedroom" and James can roll a lot more fluidly now. James sat up in physical therapy for two minutes unassisted and Maisie climbed the stairs in under 45 seconds. 

Otherwise, things have been an even keel around here. James works smarter rather than harder, and Maisie is a little Houdini.


Our other big news is the announcement of our non-profit, The American Alliance for pProm Support. I oversee a national support group for pProm Moms and it is so very helpful for people; however, since our high risk pregnancy I have recognized a need for a national non-profit organization dedicated to advocacy and research. None exists. 

Many women seek out information from the Internet when their water breaks and that's how they find the support groups... But so much opportunity exists in garnering partnerships with providers and promoting research to prevent pProm and improve outcomes. It is imperative that an organization take the lead in advocating for women going through pProm, provide support avenues for them, and help spread the word about what's working and what isn't. 

The AAPS will focus on Advocacy, Partnerships, and The pProm Registry. Advocates will be local and will work with women and providers to run support groups and One to One support. The Registry is an ever-growing database of pProm pregnancies and outcomes. This data will be a resource for future studies and research endeavors aimed at improving pProm outcomes.

Sometimes in life, your mission finds you. The little dragons are here to help people. I've known that from day one. They are changing the world, one day at a time. But if we just sit back and let things go by day after day, we lose the opportunity to help others and we miss out on our true potential.

Thanks Little Dragons, for being the inspiration behind our next big adventure. 

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