Musings of a Marfan Mom

February 27, 2019
by marfmom
0 comments

Oscars 2019

We’ve missed a couple award shows, but the dream critique team is back in business! Let’s hit it!

Awkwafina, in Dsquared2

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M: That is awesome! Sparkle, sparkle everywhere!
J: I love it because she looks like Ms. Allan my librarian!
R: That pink is my FAVORITE! That bow I love it.

Linda Cardellini, in Schiaparelli Couture

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M: Uh she kind of looks half-naked. That’s the same material my tutu uses. With her face makeup her head looks different from her actual body. You don’t need that much makeup!
J: I like it because it is pinkish and fluffy.
R: BEAUTIFUL! Like you have a scarf on you.

Billy Porter in Christian Siriano

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M: That’s my man! What. A. Gown.
J: I don’t like it.
R: Pretty! It’s white AND black.

Kacey Musgraves in Giambattista Vali Couture

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M: What the heck?! I’m speechless about how bad this is.
J: I really like the silver bow in the middle. The rest is just ok.
R: aNOTHER pink one!

Glenn Close in Carolina Herrera by Wes Gordon

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M: Girlfriend, that’s too much dress! You can’t dress like you’re going to get the Oscar unless you KNOW you’re getting the Oscar.
J: All hail Queen of Gold!
R: I love it cause I like the gold.

Rachel Weisz in Givenchy Couture

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M: Is that painful? I mean, even her face looks a little uneasy about the dress.
J: Nice with the plastic dress but did you wash your hair?
R: WHAT IS THAT.

Mahershala Ali in Ermenegildo Zegna and Amatus Sami-Karim

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M: Galaxy like. Like someone painted the galaxy on glass and then it got shattered.
J: The perfect Space Couple!
R: So nice! I don’t know what it looks like.

Jason Mamoa in Fendi

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M: I think he needs to comb out his hair more but the pink tuxedo is really nice.
J: Shouldn’t you be saving the world instead of at the Oscars? I would have rather seen you in blue, Aquaman!
R: Piiiiiiink!

Dame Helen Mirren in Schiaparelli Couture

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M: Speechless. Exquisite.
J: The pinkish beauty
R: I like so many pinks!

Melissa McCarthy in Brandon Maxwell

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M: She needs different pants. Pants are not supposed to go up to your boobs and then still be dripping over your shoes. Also, the cape is weird.
J: I would have rather seen this in all black or all white.
R: Her don’t have a dress on!

Melissa McCarthy

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M: Something about that dress just doesn’t seem right. I think I see a hedgehog there.
J: The rabbits and cats queen!
R: Why she covered in cats?

Gemma Chan in Valentino

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M: Since when does a dress have POCKETS (he asked angrily)? This looks like someone cut holes in a trash bag that they dyed pink.
J: Pink blob!
R: Soooooo pretty! Oh more pink! (she was literally shaking in excitement)

Chadwick Boseman in Givenchy Couture

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M: Wakanda forever! It looks like a suit that would be worn in Wakanda.
J: It looks like your own panther suit!
R: He no wear a dress! (insert brief conversation that not all men are Billy Porter) He have pants and shirt and shoes. I like the color.

Maya Rudolph in Giambattista Vali

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M: It’s really ugly.
J: The earrings don’t go very well with the dress.
R: I LOVE THAT!

Jennifer Hudson

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M: She has people to help lift that, right? A dress that long doesn’t really work with a tuxedo and I don’t like that belt with it.
J: How long did it take you to make that?
R: WHOA! So long! Is so big on her!

Spike Lee in Ozwald Boateng

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M: Oh yeah! 24 karat magic in my shooooeeeesss! I also really like the story behind his necklace. And the purple tuxedo is everything!
J: Purple. Gold shoes. AWESOME!
R: Hahahahaha! I like that outfit! I like the purple!

John Mulaney in Pal Zileri

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M: His jacket looks like the stuff on our couches at church…
J: I like the tuxedo. You have a really nice smile!
R: I love it on him!

Danai Gurira in Brock Collection

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M: That fabric needs ironed.
J: Your dress is so pretty and my sister was you for Halloween!
R: Her is from Black Panther? I love that clothes. She pretty.

Best Dressed
M: Billy Porter
J: Melissa McCarthy (the rabbit dress) & Chadwick Boseman
R: Melissa McCarthy (the rabbit dress)

Worst Dressed
M: Rachel
J: Billy Porter
R: Kasey Musgraves

Do you agree? Who would be on your best/worst lists?

March 11, 2018
by marfmom
0 comments

The Oscars 2018

Critiquing fashion is a family affair in our house. The boys were eager to impart their opinions once again, but this time joined by Miss R!

Kelly Marie Tran, in Jenny Packham: Embed from Getty Images
M: It’s good but it kind of looks like she’s giving the red carpet a shower.
J: Ooooo sparkly! And I like her hair.
R: Boobs ona dwess!

Emma Stone, in Louis Vuitton: Embed from Getty Images
M: Looks like a man's tuxedo. But that ribbon...be careful! Who knows what could happen if it came untied!
J: I like the red and pink. I think this is formal enough for the Oscars.
R: Bow on it!

Chadwick Boseman, in Givenchy Couture: Embed from Getty Images
M: Where's your Black Panther pose? The jacket looks like dragons and his zipper shoes are AWESOME! One of a kind!
J: BLACK PANTHER! I like the zip up shoes and the coat.
R: Gooood!

Saoirse Ronan, in Calvin Klein by Appointment: Embed from Getty Images
M: That dress and hairstyle make her a lot younger. She looks like she has tiny wings sticking out her butt.
J: Me likey!
R: It pink.

Whoopi Goldberg, in Christian Siriano: Embed from Getty Images
M: Why are you wearing sunglasses? I was shocked when I first saw the flowers.
J: I really like the flowers. It looks like a painting. You could say...Awesome Blossom!
R: Big. (or I think that's what she said)

Paz Vega, in Christophr Bu: Embed from Getty Images
M: With that bathroom tile pattern, is there a toilet behind her dress?
J: Don't get stung by bees!
R: Good.

Nicole Kidman, in Armani Privé: Embed from Getty Images
M: It looks like her leg is voting...the dress skirt looks like a voting booth.
J: Her new name is Bow-y.
R: Yes.

Mary J. Blige, in Atelier Versace: Embed from Getty Images
M: Too plain!
J: PLAIN!
R: Dat's a haircut.

Adam Rippon, in Moschino: Embed from Getty Images
M: He looks like a pilot.
J: Is he going to a wedding? (I then asked if he'd really wear that to a wedding.) Yes, I'd wear that!
R: (She jumped and waved her arms around.)

Betty Gabriel, in Tony Ward Couture: Embed from Getty Images
M: She looks like Te Fiti from Moana.
J: Her dress is broken.
R: Why?

Andra Day, in Zac Posen: Embed from Getty Images
M: I bet she's hot in that.
J: Why are you turning into a bed?

Gal Gadot, in Givenchy: Embed from Getty Images
M: Ooo looks like we have another cleaner on the job on the red carpet? Looks like a mop!
J: SPARKLY!
R: Vey nice!

Danai Gurira, in Gabriela Hearst: Embed from Getty Images
M: Perfect.
J: Is she a princess? It looks like she's wearing a tiara.
R: Has bow!

Lindsey Vonn, in Christian Siriano: Embed from Getty Images
M: Are your pants falling off?
J: OH. Oh. Um. UGLY! Like, that's REALLY ugly.
R: Furry pants fall off?

Salma Hayek, in Gucci: Embed from Getty Images
M: From the hips down she looks like a water fountain.
J: Did you just come from jail with all those chains?

Rita Moreno, in Pitoy Moreno: Embed from Getty Images
M: She looks like she's doing the hokey-pokey! She's too creepy. Nothing else to say.
J: I LOVE the necklace. I like the gloves too.

Maya Rudolph, in Valentino: Embed from Getty Images
M: She looks split in half. Is she having a surgery done on her?
J: Is she a priest at a church?!
R: (Just a very confused face)

Daniel Kaluuya, in Brunello Cucinelli: Embed from Getty Images
M: You look nothing like you do in Black Panther but this so goes with you! It's perfect on you! And that's all I'll say.
J: So handsome! I love the color.
R: Tute! (Cute)

Taraji P Henson, in Vera Wang: Embed from Getty Images
M: She looks like she's thinking dark thoughts. In parentheses,YIKES!
J: Looks like the dog didn't eat just your homework, but your dress too!

Lupita Nyong'o, Atelier Versace: Embed from Getty Images
M: You won the jackpot with that gold!
J: Gold fit for a queen!
R: Spin round!

Tiffany Haddish, in an Eritrean Princess Dress: Embed from Getty Images
M: It looks SO princessey, but not like the ones you see in movies. So, welcome to the real world!
J: I like the tiara. Is she really a princess?
R: Pretty!

Allison Janney, in Custom Reem Acra:Embed from Getty Images
M: SOOOO plain.
J: Plain! And her sleeves look like they're for someone who has Marfan syndrome.
R: Like it!

Best Dressed:
M: Chadwick Boseman
J: Chadwick Boseman

Worst Dressed:
M: Allison Janney
J: Lindsey Vonn

September 26, 2017
by marfmom
0 comments

MOCAheart: A Review

When you’re a cardiac patient, having a heart monitor you can rely on is vital. With Marfan syndrome, we have guidelines about safe maximum heart rate when exercising. I’ve tried some apps here and there, but haven’t found anything I liked.

Then, I had the chance to review MOCAheart. This monitor syncs with your phone and gives you your heart rate, blood oxygen, and blood velocity numbers. Not only can I check on my heart rate as needed, but the built in pulse oximeter (which measures the oxygen saturation in the blood) is a game changer for me.

When J was a baby and on oxygen, we had a pulse ox at home. This let us monitor his oxygen levels at night, as without the use of supplemental oxygen they could dip as low as 74 when he was sleeping. As he got stronger we didn’t need the supplemental oxygen anymore, and the pulse ox was returned with it. Every time he gets sick since, I have to trek him down to the pediatrician or urgent care to get a reading. But thanks to MOCAheart, I’ll be able to check his levels at home and skip unnecessary trips to the pediatrician.

So, let’s talk about how MOCAheart works. The box comes with the monitor, a USB charging cord, and a small user manual. You’ll need to charge the MOCAheart before using it, but it only takes about an hour to charge. You’ll know it’s charged when the little light on it goes from red to green.

In order to use MOCAheart, you need to download the free companion app, MOCAcare. Everything about this app is easy and intuitive. You’ll sign up by using your email and creating a password, then sharing some information about yourself (gender, height, weight, birthday).

The only parts of this process that frustrated me were inputting my birthday and height. Rather than a drop down menu for month, day, and then year, or a place to just type out the birthday, I had to scroll through monthly calendars that started with 2017, until I got to the year of my birth. That was unnecessarily tedious. When it came to height, the inches section was messed up. I could mark 6’00, 6’4’’, 6’7’’…all the way up to “6 ft 99.” I don’t know what that means! I am 6’1’’, so I just put down 185 cm.



Anyway, that aside, once you’ve set up your profile you can take your first measurement. The sensor on the MOCAheart is more sensitive than those apps that have you use your phone camera, so you don’t need to press down hard at all. It takes about 20 seconds to get your measurements.
Screenshot_20170926-235602



Then, you’ll get a screen like this. You can click each segment for an easy-to-understand explanation of what it is. You can mark down what type of activity you were engaging in when you took your measurement. And, if you scroll down, the app gives you health tips.


Screenshot_20170927-001607 (1)

Another tab at the bottom allows you to look at your measurement trends by day, week, month, and year. You also have the option of importing contacts to share your data with, from family to doctors.

 I like that it lets you set up multiple accounts on the same app as well: my whole family could use this!

MOCAheart is small enough to easily fit in my pocket when I’m working out, and I keep it in its box for safekeeping when I’m at home (you do have the option of buying a case for it). I wouldn’t use this as a substitute for the doctor (and the company says this isn’t medical equipment). But, the device appears reliable enough that I will be using it to 1) collect data to share with my GP and cardiologist, and 2) get pulse ox readings for J to help me decide when to take him to the doctor or ER for another reading there. I definitely recommend it!

You can get more information on MOCAheart and other MOCAcare products at www.mocacare.com and their Facebook page. You can also buy MOCAheart from Amazon.