Musings of a Marfan Mom

2013 in Review

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I’m very, very happy to say goodbye to 2013. Here’s a recap of some of the bigger moments from the blog this year.

January: It started off rather difficult with continued rejections for synagis, the RSV vaccine that J needed. On the brighter side, we prepared for and passed our adoption homestudy.

February: We got notification that we were officially approved for adoption and our profile was live on our agency’s website! So exciting! I was flaky and was late doing M’s class birthday party, but he had a great Tinkerbell party for his classmates the next weekend. J was also diagnosed with Childhood Apraxia of Speech.

March: J was able to get a spot at the hospital’s outpatient feeding clinic, to deal with his aversion to eating solid food. I was also invited to give a grand rounds presentation to the doctors and therapists there, which took place at the end of the month. Then came a big surprise: hernia surgery! All that time recuperating afterwards led to a post of adoption concerns.

April: April was a very busy month. We said goodbye to J’s crib, and a debate online turned into a discussion on the blog about People First Language and the term “Marf.” My trip to NYC for the Marfan gala and board retreat was fun, but I had the most outrageous cab ride! Our family attended an adoption conference (and I got involved with our adoption agency’s family support board) and registered with Project Cuddle as a hopeful adoptive family. J received an AAC evaluation that brought amazing results, and Amy from AnkTangle and I combined our Friday Favorites.

May: May 1st I said goodbye to my college roommate, one of my best friends. A few days later, an anonymous donor sent us an ipad for J to use to communicate. He took to it immediately and his therapists agree it’s played a huge role in him learning to talk. Mothers’ Day weekend we received our first adoption scam email. J had his 5th sleep study, my mother graduated with her PhD (!!!!), and J, at nearly 2.5 years old, got his first haircut.

June: In June we attended the wedding of good college friends, there was a controversial mention of Marfan syndrome in a major movie, and I had a nostalgic stay in my childhood home.

July: J started taking losartan, which technically happened in June but I didn’t blog about it till July. We had a fun 4th of July at home. I asked people to help support me in a bid to get a scholarship to Mayo Clinic’s social media in medicine conference. (I placed 2nd in terms of votes, but did not receive a scholarship.) I also blogged about therapy burn-out.

August: August started with the annual Marfan conference, where the National Marfan Foundation released their new name (The Marfan Foundation) and logo. J was diagnosed with trichotillomania (what’s an additional diagnosis between friends, right?), and I mused on the medical advancements made in the 20 years since my Marfan diagnosis (happy anniversary to me!). I also gained another sister, when Mark’s brother got married.

September: September sucked. Mom’s cancer came back, this time it metastasized. I spent a couple of weeks helping her out. Once I got home, I had to find a way to talk to M about cancer. On a lighter note, M brought a pretty…unusual…item to show and tell.

October: J started his IEP evaluations with the school district. We FINALLY, after 2 years, said goodbye to his dysphagia and with that, his thickened liquids. We took some family outings outdoors, including updated family photos for our adoption materials. I also wrote about the double-edged sword of sharing a Marfan diagnosis with J.

November: I pled to medical professionals to be honest with their patients – especially the kids – after a bad experience for J. J got a great report from his cardiologist, which was a relief after his growth in June. I also spent some time with my mom and sister in NC.

December: J turned 3. I also asked parents of typically developing children to be more mindful of how they are teaching their children about disability. The boys and I are in NC for the holidays too.

Thanks for sticking with me this year. I know I haven’t updated as much in the last few months, as I’ve been juggling a few family responsibilities. That should be settling down soon, so be expecting new posts with this new year :-)

I wish all of you a better, happier New Year!

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