Musings of a Marfan Mom

May 14, 2009
by marfmom
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Update by Numbers

We’ve had a lot of things happen over the past few weeks that I haven’t blogged about!

1) Menininho had his first ever play date. My friend Anne  and her daughter were in town visiting family and invited Menininho and me over to Anne’s parents’ house.

2) We attended our first event with the Northern California Chapter (Marfan). It was a day-long symposium on pediatric issues. It was so much fun to see people I haven’t seen since July’s national conference and Menininho was a BIG hit! Mark and I were also invited to sit on the chapter’s steering committee, which brings me to #3:

3) I am now helping plan the chapter’s annual BBQ. We expect about 150 people to come. I was co-chairing the event and then learned I’m the only person on the committee with fundraising experience (hooray March for Marfan!) so now I’m heading the fundraising instead of co-chairing. I’m excited about it. 🙂

4) Menininho had his 2nd play date with a church playgroup of sorts. It’s organized by another congregation, but a woman in my congregation knows the ladies who run it so we got invited. It was held at this really cute park that’s also a farm. Roosters just walk around the place and then there are pigs and sheep and cows and goats and a PEACOCK for the kids to see. I loved it; Menininho slept through the entire thing.

5) Now that I am Relief Society Director of Music, I have to plan 5 minute music lessons every week. If you have suggestions of lessons I can teach, let me know!!!

6) WE’RE GOING TO OHIO THIS WEEKEND!!!  I am really nervous about how Menininho is going to do with the plane ride and time change and all the people, but he’s been such a champ about everything else in his life thus far that I’m trying to be optimistic. Wish us luck!

Tomorrow is going to be insane tying up loose ends for the trip + a last minute doctor’s appointment, and we leave a little after really early Friday morning for the airport.  Can’t wait!

May 10, 2009
by marfmom
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Ode to My Mother

Today I’m going to join countless other bloggers in the topic and blog about my mom. I can’t write poetry like my little sister, or really funny, insightful articles like my brother, so I thought that I’d showcase Mom in photos.

Mom was born in Brasil and immigrated to Cleveland as a young girl. She learned English as she went through school, also helping raise her younger twin brothers. She started living on her own at 14 and was the first person in her family to go to college (NYU). Mom was willing to move back to Ohio, which she hated, for the sake of my dad’s job and my health. She set aside her dream of being a lawyer to get a degree in education so that she could be home more often to raise us kids. All 3 of us ended up being ill in some form or another, which I’m sure no mother anticipates, but my mom has handled this challenge with grace. She also raised us as a single parent through our formative years while working full time, going to school to get 2 Masters degrees, and taking care of Dad. Just 5 weeks after Dad died Mom was diagnosed with cancer, and although those 2 things together may seem like an insurmountable challenge, Mom got through that too and even had the energy to help me plan my wedding. Now, Mom has moved to a new state, away from family, and is pursuing her PhD. I am so proud of her and lucky to have her as my mom!!!

May 8, 2009
by marfmom
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Confused

Menininho is really confused about physical milestones. He’s met all his social ones on time or early (making eye contact, smiling, giggling) but is kind of behind on his physical ones. At 3 months old he doesn’t, when flat on the floor, lift his head up too well, has pushed himself up by his arms only twice, hasn’t rolled over, and doesn’t seem interested in reaching for or even swatting at his toys.

I practice these things every day with him.  Menininho gets tummy time on his own and on the Boppy, has several of those toys he lays under, and spends plenty of time on a blanket. I’m not really worried about this though, since he’s meeting the social milestones and because all kids develop at different rates.

The reason I say Menininho is confused is because even though he’s not really doing any of the milestones that come before it, by golly does this boy want to SCOOT. He’s been propelling himself with his legs since he was maybe 6 or 7 weeks old. He doesn’t get far, maybe a few inches, but he focuses sooo hard on it, scrunching up his face and grunting.

This morning I set him on the boppy, hoping he’d lift his head up some more. Instead, this is what happened, all from him kicking his legs:

Before:

After:

You can’t tell in the photo here, but he’s still kicking his legs, pushing against the Boppy trying to propel himself further forward. I’m going to be in trouble when he does learn to crawl…he’ll be all over the place!

I’m thinking he’s going to be a Professional Breaststroke Kicker like his mom. (I could out-kick even some of the All-State swimmers on my HS swim team, but force me to add in the arms and well, that’s why I was one of the slowest swimmers on the team…)