Tag Archive | march of dimes

Advocacy Day

As I mentioned before, our Minion family was invited to join other families in a trek to the state capital for the March of Dimes Advocacy Day. It was the first Minion Family Roadtrip!

We drove up the night before Advocacy Day and stayed in a hotel (graciously supplied by the March of Dimes). Little Miss Minion serenaded us for about half of the drive with a mashup of “twinkle twinkle little star” and the alphabet. We had hoped that she would fall asleep, but that only happened in the last thirty minutes of the drive.

We arrived at the hotel and checked in, brought up our luggage, and crashed. Little Miss Minion does not sleep in our bed at home, so she was very excited that Mr Minion and I were joining her. The catch is that she likes to sleep on her back, starfish style. And she’s never used a pillow. So that was an interesting several hours.

We woke up, got cleaned up, and sat down for breakfast (which was surprisingly good), and then made the short trip into the capital. After parking and walking to the building, we found ourselves inside the huge building and wandered until we found the March of Dimes area. There is large open area where different lobby groups can reserve space with tables and chairs for their members to wait between meeting their representatives. It’s kind of like home base. We met up with the group there and read over the materials we had been given. For each meeting we had scheduled, we had a folder with the information about the two bills we were lobbying for, information about how the bills could help people, and our personal stories. Several weeks earlier, we had been given a template to fill out that would share our own story with the NICU. We were also given a folder that contained copies of everything for us, including our schedule.

Our first meeting went well, and our personal story was well received. Having told the story WITH Little Miss Minion present and WITHOUT, it’s much easier for the audience to tell it with her there. People don’t expect good things when you start off with “28 weeks, and weighed 1 pound 14 ounces” and you can’t really blame them.

Our other meetings were good, and we got to sit in on a session of the House. The March of Dimes presented one of the representatives with an award for her work on the house bill. We were provided with a great catered lunch from Panera in between our meetings, and there had been water and soft drinks in a large cooler available as well.

It was so nice to see our primary nurse J again. I see her every once in a while when I run into her in the NICU but she hadn’t seen LMM since her 1st birthday. And Little Miss Minion was so well behaved the whole time. She got a little fussy towards the end of the day, but that was it. She slept most of the way home, and we were all in bed by around 7:30 that night. It was a long day, but a fun and rewarding one. I hope we can do it again next year!

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March of Dimes

I have some exciting news! One of Little Miss Minion’s primary nurses has stayed in contact with us since we left the NICU. We have been invited to present our story to our state senators and representatives in March! We will be part of an Advocacy Day for the March of Dimes, which is an organization that does tons of research on prematurity and birth defects.

This visit will entail meetings with our local representatives and telling them about our experience in the NICU. I’m assuming the purpose is to help keep funding or grants or something. More details on that later. I’ll be working on a short explanation of my pregnancy complications and of LMM’s NICU stay and complications.

I don’t have a ton of info yet, but I’m so excited (and nervous) to be able to help this organization.

Slow and Steady

Little Miss Minion had her (almost) 12 month checkup this afternoon. She’s technically only 11 months, but close enough. She is now a whopping 16 pounds, 2.2 ounces, which is 8.6 times her birth weight, and 25 inches long. Her pediatrician said that she’s one of the happiest and social babies she sees, and that she’s very happy with her progress. She went over Little Miss Minion’s stats with me, as always, and she’s right on track. She’s on the regular growth chart now! Usually, we use the preemie growth chart because it adjusts for the slower growth and lower beginning weight of preemies, comparing them to each other instead of full term babies. But this time, we compared her to the chart for full term babies born on her birthday, and she’s at 6.6%! Her head circumference is perfect, which is good news for both brain development and hydrocephalus concerns. Stable head growth is good. 

Upcoming adventures include a March of Dimes walk in a couple of weeks, orthotics, and another neurosurgeon follow up and MRI. The March of Dimes walk will be her first real contact with The Public aka Germ Central. The good news is that the event is outside and the team I’m walking with is her NICU team, mostly nurses, who know all about Preemie Protocol. One of my coworkers and her husband are walking with us, plus my sister is coming! I’m touched that other people want to walk in support of LMM, and for all of the donations we’ve raised for the cause. 

Other than that, not too much else going on in the Minion household.