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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Special Education Evaluation

Tomorrow is a big day for Little Miss Minion. Since she turns three in May, she ages out of the program that has been providing her speech and physical therapies. From here, she either graduates from therapies or she transitions into the local school district to receive services through them. Tomorrow is her evaluation. They will test her in cognition, expressive and receptive language, gross motor skills, and fine motor skills. There are a bunch of percents involved and she has to score below some deviation blah blah blah.

I don’t know the math involved but they take all her scores and compare them to where she “should” be. So basically this is where we find out if she’s caught up to her actual age vs her chronological. Since she was three months early, we adjust her age for three years. Theoretically, she should be caught up by her third birthday. Tomorrow, she’ll do the tests that will tell us how caught up she is.

If she doesn’t qualify, we could always pursue private therapies if we wanted her to continue. Or we could be done until she needs future evaluation. It’s a balancing act. Do we cut the cord and see how she compares to her peers in kindergarten? Or do we pay out of our pocket for therapy that the school district has determined she doesn’t need?

Or does she qualify to continue services through kindergarten? We’ll find out soon!

The Disney Ruling Class

So, when you have a toddler who likes colorful things and singing, you find yourself listening to and watching a lot of Disney movies. When you and your husband are also history dorks who have a lot of general knowledge of the royal hierarchies of various countries, you might find yourself wondering which of the Disney Princesses has the highest rank. Well, I’ve made my own ranking of who has the most royal clout out of the 13 main Princesses. You are welcome.

Elsa from Frozen would get top spot. She’s already a Queen Regnant, so she gets the honor of being the current ruler of the Ruling Class. If she were to die or abdicate, the following would be the line of succession:

2. Anna from Frozen, only because she’s next in line to Elsa by right of being her sister. If not for that, she drops down to #10.

3. Aurora from Sleeping Beauty. She is a Princess Royal (next in line for the throne) in her own right, and she marries Prince Philip, a Prince Royal. The two of them together would be a King Regnant and Queen Regnant, as opposed to either of them being Consorts.

3. Rapunzel from Tangled. She is next in line to become a Queen Regnant, and her husband will be a Prince Consort, since he is a commoner.

4. Merida from Brave. She is also a Princess Royal, destined to be a Queen Regnant…unless she gets screwed over by Salic Law and her brothers inherit.

5. Ariel from The Little Mermaid. While her personal rank is lower on the scale due her older sisters, she marries a Prince Regnant, who will eventually become a King Regnant, making her a Queen Consort.

6. Snow White (eponymous). She is a princess of unspecified rank who marries a prince of unspecified rank. Definitely royal, but no one knows to what degree.

7. Jasmine from Aladdin. This one is kind of weird. Jasmine holds the position of the only child of a sultan. This means that when she marries, she will become a sultana. However, given that most societies are patriarchal, her husband will take the title of Sultan and ultimately hold all the power.

8. Cinderella (eponymous). She is the daughter of some minor noble who marries a Prince Royal and will eventually become a Queen Consort.

9. Belle from Beauty and the Beast. A commoner, she marries a Prince Regnant of some minor principality in France. She will become a Princess Consort.

(This is where Anna would go, were it not for her direct blood relation to the only current Queen)

10. Pocahontas (eponymous). While not technically royal, she holds the rank of Chief’s daughter and is considered honorary royalty. She marries a commoner, so her rank remains the same.

11. Tiana from The Princess and the Frog. She is a commoner who marries a Prince who likely abdicates his throne in order to be with her, making them both commoners.

12. Mulan (eponymous). She is a commoner who marries a commoner. She only gets to rule if everyone else dies first.

I haven’t seen any sequels, so this whole thing assumes no children/heirs. So there you have it. Disney’s Ruling Class Hierarchy.

Little Things

Little Miss Minion has been surprising us with little things recently. She learned “old McDonald” at daycare last week, so now she sings that all the time. She talked to me about “dinosaurs-raaaawr” yesterday and wanted to watch dinosaur videos. I was getting her changed at some point and she told me to “watch my fingers” so I didn’t smush them in the dresser drawer. She got a little set of magnetic numbers and letters for Christmas and she can identify quite a few of them. It seems like each time we play with them, she knows one or two more.

This morning, she wanted me to carry her into daycare because it was too cold to walk. She also told me that Santa was coming because of the snow, and then we had to sing Rudolph the Red Nosed Reindeer. She can tell when we pull into the parking lot of daycare and she yells “we’re heeeeere!” When I pick her up at the end of the day, she says “mama, go home. Ebby bay home.” Ebby bay = everybody.

Next up: speech assessment in March.

Transitions

Since Little Miss Minion is coming up on her third birthday, she will be aging out of her early intervention program. Once she ages out, she will either qualify for services through our local school district or she will be considered caught up with her peers and will not need additional services.

If she needs services, the district will provide transport to and from her daycare and the school. I think they said she would do half days a couple days a week. She will be tested for speech, gross motor skills, and cognition. Our appointment is in about a month and a half, closer to her birthday.

If she doesn’t qualify, there are other avenues we can go down if we feel like she still needs help.

I guess we will find out. Her appointment is toward the end of March. It will be done at the school building with their therapists.

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.

Reindeer & Santa

The Christmas Season has arrived and Little Miss Minion is learning new vocabulary to go along with it. Yesterday, she asked for “reindeer song” in the car on the way home from daycare and then asked “santa coming?” off and on for the rest of the evening.

She is talking much more since her surgery and my theory is that the fluid was slowly building up and pushing on the part of her brain that controls speech. Less pressure=more talking. Some of her delay could be due to the PVL (essentially, this is dead or damaged brain tissue) but it’s hard to know for sure.

This spring brings the expiration of her enrollment in the early intervention program that gives her physical and speech therapies. She probably won’t qualify for PT since she is pretty much caught up with her peers, so that will be one less specialist. Speech is a toss up right now. There is a big jump coming in expectations and if she doesn’t keep up, she might qualify for services through our local school district. I have a feeling she will still qualify but she’s improved so much over the past few weeks, it’s hard to tell.

Hoping everyone is having a cheery holiday season so far! Remember to wash your hands and keep the cold/flu/RSV germs away!