Musings of a Marfan Mom

January 8, 2010
by marfmom
5 Comments

Please Help McKenzie

McKenzie is a 2 year old beautiful little girl with a very severe form of Marfan syndrome. I first met her mother, Jennifer, a few months ago via NMF Connect, a social networking site for people with Marfan syndrome & related disorders and their families. McKenzie’s aorta is now larger than that of even many adults with Marfan, and she desperately needs surgery. If she does not get this surgery soon, she will die.

McKenzie’s family has arranged the top surgeon in the country to perform her surgery, and he is at Johns Hopkins. However, there are many things that McKenzie is going to need in order to make the flight, and that is where we’re hoping that you, your friends, and your networks can come in.

AngelFlight has agreed to transport McKenzie from her home in Florida to Johns Hopkins in Maryland, but in order to do so, they need the following items:

– Plane to fit 5-6 people and have access to use a AC adapter or Car Adapter to plug in her equipment.
– 2 ventilators weighing appx 10 lbs each
– 1 suction machine weighing 8 lbs
– 2 oxygen tanks
– Emergency bag with supplies
– At least 2 other travel bags

If you, or anyone you know, is able to help with these items, you may contact Jennifer via McKenzie’s Facebook group Pray for McKenzie. Thank you so much!

January 7, 2010
by marfmom
8 Comments

Beating Murphy's Law

Murphy’s Law of Motherhood: When you really, desperately need human interaction that doesn’t include phrases like “Let’s change that stinky diaper!” and “Ba-baaa-ba-ba,” that is when the universe will intervene to try to prevent it.

I’ve been looking for a playgroup, or class, or SOME way to meet women. A few ladies in my congregation get together two or three times a month to have lunch at the park, which I love, but I need something more often, especially as Menininho is getting older.

Finally, after some repeated (loving) nagging on my husband’s part, I signed up for a formal group. There are dues and thrice weekly outings and mothers’ nights out and family parties and guest speakers and the whole nine yards. Last Thursday they were meeting at a local library for a Mommy and Me story time. I got all dressed up, even did my hair (!), picked out the baby’s clothes carefully (jeans & a button down), and we drove 30 minutes to the appropriate library. Naturally, the event had been canceled and no one had changed it on the group’s calendar. Lame.

Today was my 2nd chance: Mommy Mall Walk. So of course, this is the one morning in the history of our being married that my husband misplaces his keys. We spend a half hour looking around the house, which of course means I’m not browning the stew meat for tonight’s feijoada. Just as I tearily hand Mark the keys to my car so he can get to work, the keys magically appear out of the back of the diaper bag. Say it with me: Hallelujah!

Almost as awesome? I manage to brown the meat, get dressed, get the baby dressed, and packed up in enough time to stop by Starbucks. Am I the only person who feels just a little more adult/put together/confident/cool carrying a cup of Starbucks hot chocolate? Probably. But that’s ok, because this post isn’t about Starbucks, it’s about how

Ohmygosh I carried on conversations, conversations with full sentences, with a group of other women whom I had never met and who were really nice!

I’m going back on Friday.

January 6, 2010
by marfmom
11 Comments

The Body is BACK (mostly)!

Feb. 2nd, 2009

Jan. 5th, 2010

It took almost a year, but yesterday morning I stepped on the bathroom scale and low and behold! I’m at my pre-pregnancy weight! My body’s not *quite* the same…I’m a little curvier than before I got pregnant so I don’t fill into all my old pants (and alright…I *might* be sucking in the c-section belly a bit in the first shot!) but it feels great to be back where I was weight-wise. My first #mamafit goal is complete! 🙂