Friday Favorites

I’m starting a new meme on my blog called Friday Favorites. Each Friday I’ll feature an article or articles from other bloggers that I’ve really enjoyed over the week. If any of you think you might like to participate from time to time, I’ll set up a Mr. Linky account. So, here are this week’s favorites, in no particular order:

Anne at Dou-La-La is a blogger I’ve gotten to know from Twitter. [That’s a great place to find fabulous blogs to read, by the way!] A month or two ago we got into a conversation about the use of doulas for planned c-section births. I wondered whether they would be useful, since it seems so much of their purpose is in supporting the mother during labor and helping prevent c-sections. Anne showed me how useful one would have been for Menininho’s delivery and promised to write a blog post about the use of doulas for c-sections. I thought it was great!

Enjoying the Small Things is another blog I came across via Twitter. In this post Kelley, the author, details the birth story of her daughter Nella Cordelia. It’s one of the most beautiful birth stories I’ve ever read. You might need some tissues but I think everyone should read this!

Amy at Crunchy Domestic Goddess wrote a great response to the Today Show’s segment on a woman having a c-section because her baby was estimated at 10 pounds. Without passing judgement on the mother, Amy succinctly summarizes one of the misconceptions about birth. It, and the follow-up post on her main blog, are good articles to read for any expecting mother.

I came across Marcus’ blog via Twitter too. He writes an article entitled Who’s Black and Who Isn’t? about what it means to be multi-racial in the UK. As a bi-racial person myself, this really resonated with me. My favorite quote is: “So when it come to ticking the box on a form, for mixed race people there will never be one answer as to how we define ourselves. It may differ from our own siblings, and may even change over time. They key thing is, it’s all about self-definition.

Putting the Fun in DsyFUNctional is a blog I’ve come to read through Mama Kat’s weekly writing workshop. This week I learned she’s an ICU clerk, and she put together a great list of Dos and Don’ts for when you have a family member in the ICU. These are all great and I have to agree: DO bring treats for the nurses!

I hope you enjoy these articles and bloggers as much as I did!!!

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The Worst Winter Weather

For Mama Kat’s Writers’ Workshop, I intended to write on prompt #2: describe your worst winter weather story. However, as I explained to Mark the particular story I’d chosen (how my 23rd birthday was ruined), he pointed out that really, this is the story of HIS worst winter weather experience. He’s totally right. He’s also gracious enough to let me write about it anyway, as long as I acknowledged I’m tweaking Mama Kat’s prompt.

In Ohio, snow comes Oct. through April. It shouldn’t have been a surprise that we had an honest-to-goodness blizzard in March, but it was, mostly because I had plans. See, Mark and I had been married for almost a year at that point, but only been living together a couple of months. He was finishing his Masters as I was starting mine, so he moved back in with his parents and commuted the 3 hours to visit me on weekends. As you can imagine, it put a kink in socializing with other couples.

But not for our birthday! Our birthdays are in the same week and I had planned a small joint celebration dinner party. Our good friends Megan and Scott were coming over and I was making the Brasilian meal I make every year for my birthday: pastels and black beans and rice. This was just the sort of thing I imagined we’d do as newlyweds.

Then the blizzard hit. The day of the party.

Early in the day, I realized I was missing a few ingredients and asked Mark to go to the store. The roads were questionable, so he decided to walk the 8 blocks to get there. I called him a little later b/c I’d forgotten to add something to the list and unbeknownst to me he was already halfway home, so he turned around and went back. NOTE: If I’d KNOWN he’d left the store I would have told him to forget it. Just sayin’.

Halfway through making dinner, Megan called to tell me that their car was stuck and they wouldn’t be able to make it. I was so disappointed! Stupid snowstorm! Well, the roads were pretty clear by then, so Mark decided to go pick up Scott and Megan. Our car was snowed in too, so he gave a kid with a shovel some money to dig us out. The car moved about 5 feet before getting stuck again, and that was that.

Mark and I enjoyed our Brasilian meal by ourselves and stayed home for a few days. I believe even church was canceled that Sunday. And come to think of it, I never fulfilled my promise to Megan to cook her a Brasilian meal. It was the worst winter weather for me because I lost my chance at our dinner party, and for Mark because he actually had to go outside in it.

Here are some pictures from Blizzard 2008:


And can I just say? I am LOVING being in California now!

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The Biggest Cheerio of All

The other day, Menininho would only eat cheerios. Off the floor. Some investigation in the pantry led him to the biggest “cheerio” of all.


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CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!

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Exercise with Marfan

It might surprise you, but exercise is really important to Marfan patients. Because we’re limited in our activities, it’s even more vital that we do what we can to stay heart-healthy. The information I’m providing has come from what I’ve been told by my doctors and what I’ve learned from the National Marfan Foundation’s website and annual conference. Any other sources are cited. To an extent, what activities are appropriate for someone with Marfan vary on an individual basis. By all means discuss any questions you have with your doctor and have real discussions about it, but remember what is ok for me might not be ok for you and vice versa.

Marfan does bring about some universal restrictions.

1) Contact sports should be avoided because of the risk of jostling the aorta and the head (which could cause lens and retinal problems). These include football, rugby, and even basketball (which carries the additional risk to the aorta of frequently stopping suddenly).
2) Isometric exercises, where you are holding your breath and straining, are quite taxing on the aorta. These include weight lifting, crunches, push-ups, and some forms of Pilates.
3) Any activity that taxes you to the point of exhaustion. There are two ways to define this. Marfs on beta blockers (atenolol, toprol) should keep their heart rates at 100 beats per minute or below; those not on beta blockers (like Losartan or verapimil) should keep below 120 bpm. The second way of knowing if you’re working too hard is to see whether you can keep up a conversation while doing the activity. If you’re too out of breath to get out a string of words, you’re probably working too hard.
4) Other questionable activities include roller coasters (risk to the eyes), rifle shooting (risk to the heart/aorta), volleyball (contact), and soccer (all of the above).

However, as I said before, there’s definitely variability. For example, soccer for 5 year olds is very different from soccer for 14 year olds. A patient without current aortic complications may have a little more leeway than a patient prepping for aortic surgery (keeping in mind, of course, that aortic complications may very well develop from repeatedly engaging in risky activities).

So, now that we’ve covered the “do-nots,” what about the “usually oks?” A variety of sports, when done in a mild to moderate manner, can be great. I swam in high school. Being in the water eliminated painful impacts on my joints and I found I was a natural at the breaststroke due to my long, hypermobile legs. I swam on the team, with heavily modified practices. I know a teen who was one of the top 25 youth archers in the country at one point. Tennis and golf can also be ok. Dr. Dietz said that even paintball can be alright, with the proper chest and eye safety equipment. The benefit of physical activities to our self-esteem cannot be overlooked!

As patients with a life-threatening illness, we have to measure the quality of our lives with the quantity of our lives. If your doctor wants you to give up something you love, don’t be afraid to have a frank talk with her. Maybe you can reach a compromise, like modified practices, or echoes every six months instead of every year. And if you can’t reach a compromise, and the activity really isn’t safe, at least you’ll know why and feel like you’ve been heard, whatever comfort that is. I hated giving up horseback riding and basketball, but I developed a love of writing and eventually came across swimming, two activities I might not have found otherwise.

Now, last week reader Erin asked me how I exercise, between the doctor-imposed restrictions and the restrictions of my own body, not to mention the time constraints associated with being a mom. I’ve written before about my chronic pain and the trouble I have breathing, due to my heart not processing oxygen quite right, and these have gradually gotten in the way of my ability to exercise.

But here’s the thing. I think that we need to be easy on ourselves and realize the best we can do is better than not doing anything. Right now, I’m doing physical therapy instead of going to the gym. I go to the hospital for this twice a week. Sure, it’s doesn’t necessarily get my heart pumping all the time (sometimes it does!) but it’s what I can do today. Eventually, it will help lessen my pain so I have the energy for other things. My therapist has done research to help me adapt the exercises to be non-isometric. On days I don’t have PT, I take the Menininho for a walk around our apartment complex or the local mall or, if he lets me, I do 20-30 minutes of the stationary bike at the apartment “gym.”

Beyond that, I schedule everything. I have my little icalendar on this laptop and I’m lost without it. Every doctor appointment, playgroup event, church meeting, phone conference, and errand gets recorded so that I don’t overextend myself. If I have a busy string of days, I take a day off as pajama day and the baby and I lounge around in our jammies all day long and read books and watch bad TV (well, I do, not him). It’s a system that’s worked out pretty well, as my pain flairs up when I’m overtired.

How do all of you (especially those of you with chronic illness) fit in the time to stay fit?

The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

Citations:
Judge, D.P., and Dietz, H.C. (2008). Therapy of Marfan Syndrome. Annual Review of Medicine, 59: 43-59.

Ammash, N.M., Sundt, T.M., and Connolly, H.M. (2007). Marfan Syndrome – Diagnosis and Management. Current Problems in Cardiology, 33: 7-39.

Raanani, E. and Ghosh, P. (2008). The Multidisciplinary Approach to the Marfan Patient. IMAJ, 10: 171-174.

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Lessons Lived, Lessons Learned

Today I’m again writing with MamaKat’s Writers’ Workshop. I picked prompt #5: List 10 things you never knew until you were a mom.

1) Blueberry stains come out. Beet stains…not so much.
2) Don’t ever take for granted the power of a hot, quiet shower. Those are rare gifts.
3) Twitter is absolutely amazing. I might have mocked it before Menininho, but the women I’ve “met” over there since his birth have been lifesavers!
4) I actually enjoy being a SAHM. I thought I’d go crazy after 6 months of being at home, but my kid is pretty fun to hang out with (most of the time!).
5) That said, I’ve learned it’s vital to me that I’m not just “Mommy.” I’m happiest when I have some time to write and put my Masters of Public Health to use & in doing that, remind myself that I’m also “Maya.”
6) You know when you’re asking yourself “Hmm…wonder if he’ll hold out long enough for me to run more errand before melting down?” If you have to ask, you know the answer is “no.”
7) If you ignore the above voice in your head, you WILL become That Mom with That Kid and Those People will hate you.
8 ) Sandra Boynton is God’s gift to parents. Reciting Moo Baa La La La will keep a child from crying during shots and buy you enough peace to get a haircut.
9) Dignity is overrated. A happy baby is much more important than what some stranger might think (say, the hairdresser cutting your hair while you repeat the words to Moo Baa La La La over and over).
10) There’s nothing sweeter than watching my husband wrestle with my son.

Moms (or dads), what things have you learned since becoming a parent?

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New Back Brace

It took 3 years, but I finally convinced my orthopedist to order me a custom back brace. I have a rare type of scoliosis, very flexible with a teenage onset and that continues to progress even as an adult. My specialist at Hopkins suggested bracing me 3 years ago to see if that had an affect on the progression, but my local docs always insisted on an off-the-shelf, one-size-fits-all corset brace. News flash: Men don’t have hips, but some women do and a brace that doesn’t flair at the hips isn’t going to fit such a woman. (You’d be surprised at how often [male] doctors tried to convince me that male and female bodies are actually the same.) Since these braces invariably slid off my hips and up my chest every day, I quit wearing them and my scoliosis kept progressing.

Anyway, my local, politically incorrect ortho wrote me a Rx last month for my very own custom, plastic back brace. Have you ever had one made? It involves wearing a skin tight, t-shirt material halter dress, which might be sexy if 1) it wasn’t totally see-through and 2) I had my pre-baby body of 5 years ago. So now that I’m feeling a smidgen awkward, two people come in and start wrapping me in strips of fiberglass, like I’m a giant 5th grade papier-mâché project. They were really nice about it though (mostly just glad I wasn’t a squirmy 5 year old or unconscious, the latter of which apparently happens from time to time since they wrap you really tightly).

This is me without my brace (curve: 40 degrees):

This is me once I’m braced.
It goes over the tank top and under my shirt.

Added benefit of the brace? “You won’t be able to eat those extra French-fries without loosening it up,” my doctor told me. He’s a winner, that one.

Now, I have a habit of naming things, and I think this brace needs a name. It also needs to be a masculine name because, as my friend Danielle put it, “He’ll be squeezing you tight and with you more than a stalker! He’s always got your back, and, just like a man, he is helping you feel good in the long run, but sometimes gets in the way and doesn’t look flattering with your sexy, slinky dress.

Wonderful readers, I need your help choosing a name! So far all I can think of is Hugh (yum!) or The Situation (tell me you get the joke!). Please leave your suggestion for a name (or vote for one of those two) in the comments and I’ll choose a name in the next few days. I don’t really have any fancy prizes to offer, but if I choose your suggestion, I’ll link up to your blog if you’ve got one!

Below you’ll find some pictures of said super-sexy brace. He felt the need to show you just how awesome having a brace can be.



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