Musings of a Marfan Mom

September 26, 2017
by marfmom

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.

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.

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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 and their Facebook page. You can also buy MOCAheart from Amazon.

August 11, 2017
by marfmom

Long Time, No Blog

Hello, Blog! It’s been awhile! Here’s a quick recap of what’s happened in the past 6 months:

– I had a hysterectomy.

– We adopted a baby girl, Baby E, and she has the most delicious cheeks you’ve ever seen. We were matched before our home study was finished, which was a huge difference from our first adoption process.
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– Libby Sparks, my friend of twenty years, my and J’s nurse practitioner, and E’s namesake, died. With her passing, I’ve lost all the women who taught Young Maya what being a Marf is all about. While Libby didn’t have Marfan syndrome herself, she understood the value of the community in a way that most non-Marfs don’t. She spent a good deal of time over the years connecting me with other affected people. She attended the conferences and chaperoned the kids’ program, often with her husband. When I moved to Columbus to pursue graduate school (not my first choice, but multiple circumstances made it the best choice), she told me that she believed God wanted me there because I had work to do in the Marfan community. It was Libby that supported me in starting a network group there, and asked me to create a CEU course on diagnosing Marfan syndrome in the ED for my Masters Project. She is the reason I felt comfortable having biological children, and the medical professional who supported me through our adoption process with Miss R. J called her “Doctor Libby,” and “My Libby,” and he trusted her completely. I’m selfishly grateful that she knew about E and was able to see pictures of her before she died. Libby was adored by all her knew her, and without her there is a hole in my life that will never be filled.
– Mark’s dad passed away shortly thereafter. Early onset Alzheimers is a horrible, horrible disease. He was an amazing grandfather and I hate that he missed out on really knowing his three granddaughters, let alone future grandchildren. My boys at least will have some good memories.

– My grandfather died a few days later.

– J got fitted for his first wheelchair and it’s amazing and I’ll be blogging about it soon, complete with video!

– Mark went to China for the first time, for work, and got an unexpected taste of the Chinese healthcare system.

– We traveled to the Marfan Foundation’s annual conference. This year it was in Atlanta. It was the biggest conference to date and, as always, a great time to reconnect with our genetic family.

– I’m speaking at an AHA policy meeting next week!

What has gone on with all of you?

March 5, 2017
by marfmom

M & J’s Oscar Commentary 2017

The Menininho (8) and J (6) are at it again with their critiques. Some parental comments are sprinkled in. Let’s get to it!

Ruth Negga, in Valentino:

M: Too ordinary.
J: This reminds me of a cardinal.
Mark: Nice ribbon.

Naomie Harris, in Calvin Kline Collection:

M: Yah, you’re gonna wanna go buy something else.
J: I don’t like it. That big cut in the middle is ugly.

Ryan Gosling, in Gucci:

M: Hey dude…
J: OH. EM. GEE. I love it! I wish I had one of those shirts!

Brie Larsen, in Oscar de la Renta:

M: Why would you use a bunch of dead bats for your dress?
J: I love it! I love that curve in the dress. It’s awesome!
Mark: Oh my goodness, she looks like she’s being eaten by a giant fish!
Maya: The dress is fine, but that is some “I just stepped out of the shower and didn’t even comb it” hair.

Meryl Streep, in Elie Saab Couture:

M: I love it.
J: I kiiind of like it. There’s sparkles on it, but the rest is just blue.
Mark: It’s majestic.

Emma Stone, in Givenchy Couture:

M: It looks like you just robbed a bank. Give them back all that gold!
J: Where did you find the gold?

Hailee Steinfeld, in Ralph & Russo:

M: Hello Captain Underpants! Next time don’t wear a see-through dress!
J: Disgusting! I hate see-through dresses.
Mark: Flower nipples are not….NO.

Chris Evans, in Salvatore Ferragamo:

M: One of a kind! I like it!
J: I love it! I love this shade of blue!

Leslie Mann, in Zac Posen:

M: (side eye) Neeeeext!
J: I don’t know what to say! It makes me hungry. It reminds me of unripe bananas! It’s awesome!

Taraji P. Henson, in Alberta Ferretti:

M: It’s too ordinary. It doesn’t have enough color in it.
J: I don’t like cuts in the dress. It looks like the dress got murdered.

Dakota Johnson, in Gucci:

M: Your necklace looks like the logo from Mighty Minotaur on Lego Nexo Knights. I don’t know how to describe this dress but it looks cool.
J: She should have a bow in her hair, not on the dress.

Amelia Warner, in Emilia Wickstead:

M: Guards, throw her to the dungeon! The dress is so ugly it should be a crime!
J: Dalmation dress.

Pharrell Williams, in Chanel:

M: You’re the best man I’ve ever seen and I like your smile.
J: Snazzy! Especially the bow and the 3,045 necklaces!
Mark: At first I thought he was going for a musical staff motif, and then I realized it was just necklaces and so I was less impressed.

Kirsten Dunst, in Christian Dior:

M: The dress is too big and poofy.
J: The only thing I like about this is the necklace.

Jessica Biel, in Kaufmanfranco:

M: Good thing my eyes aren’t sensitive. Yikes!
J: Gaudy.

Chrissy Teigen, in Zuhair Murad:

M: Is that dress made of Elmer’s glue and then you got a bunch of confetti stuck to yourself?
J: Her dress looks like fireworks.

Viola Davis, in Armani Privé:

M: I like her wallet. I like the dress.
J: I don’t like the cut-off in the shoulders.

Dwayne Johnson, in Robert Mata:

M: High five!
J: Blue fuziness! I love it!

Halle Berry, in Atelier Versace:

M: Her dress reminds me of cities at night.
J: It got shredded by cats, or by Shredder from Teenage Mutant Ninja Turtles.
Mark: Whoa. The hair and the dress are competing for attention.

Nicole Kidman, in Armani Privé:

M: Whoa whoa whoa whoa WHOA. You should REALLY not make a dress that’s your skin color.
J: I don’t like the pattern and I hate everything else.

Octavia Spencer, in Marchesa:

M: You + a weird bird = that
J: It looks like something is trying to eat her.
Maya: I’d like this more if the proportions were better…the skirt being up so high shortens her.

Janelle Monae, in Elie Saab:

M: Is it possible to catch night and put it on a dress? I love it!
J: LOVE. IT. Look at all those patterns! Awesome, awesome.

Best Dressed:
M: Janelle Monae
J: Emma Stone and Leslie Mann
Mark: Ryan Gosling and Meryl Streep
Maya: Taraji P. Henson and Janelle Monae

Worst Dressed:
M: Leslie Mann
J: Nicole Kidman
Mark: Janelle Monae
Maya: Naomi Harris, Jessica Biel, Dakota Johnson, and Amelia Warner. I could not narrow it down.