Lots of excitement this week, plus I saw my shadow getting out of bed this morning so I declare winter over. My shadow, my rules. Moving on to some quick ones.
1. I sent my oldest two on a bus to Washington, DC last Friday for the annual March for Life. The rest of us streamed the rally and march on EWTN. Our church carries a large banner, so as the camera panned the crowd, we kept out eyes peeled. Finally, we caught sight of the banner in the distance, and the network switched to a different camera altogether. We intently watched the screen hoping to catch another glimpse and maybe even make out some blurry figures of fellow parishioners. When suddenly the camera switched and there was Byron right in front of the camera with his friends! We all cheered and I exhaled a deep sigh of relief that he hadn’t gotten lost on the Metro.
2. Tony was on a camping trip all weekend. I used the opportunity to haul Fulton’s medical equipment upstairs and give him the chance to sleep in our bed. He’s heard his siblings mention sleeping in our bed after having a bad dream, and he wondered why he’d never gotten to do so. With Tony away, I had the space to set up Fulton’s stuff, tuck him in with his favorite pillow and stuffed animals, and still have plenty of room for myself. As he laid in bed the first night before lights out, his sisters jumping on the large bed around him, he was grinning from ear to ear. On Sunday Fulton thought it might be good for Tony to sleep downstairs on the hospital bed so he could continue to sleep upstairs. As I mentioned in an Instagram post, it’s times like these I realize Fulton doesn’t need an effort made to make him feel more special, he just wants the effort made so he can be more like everyone else. I think that sentiment reflects the heart of a lot of disability activism.
3. Tuesday I spent ALL. DAY. at Children’s Hospital of Philadelphia. But I can’t be too upset about it because we were meeting with doctors to discuss the new FDA approved TREATMENT (not trial! an actual TREATMENT) for SMA known as Spinraza. FDA granted broad approval of the drug in December, meaning people with all types of SMA could get the drug. It’s shown the most benefit in the most severely affected type ones, however, additional trials measuring the effectiveness in older children and adults is continuing. With treatment, type one kids who otherwise would be unable to swallow, talk, smile, or breath on their own, were instead as strong as Teddy at a year, or slightly stronger!! (At a year, Teddy was able to stand and crawl.) Since the benefits are not as well-known in children as old as Fulton and Teddy, my hope is just that the drug will stop the progression of the disease for them. That in and of itself would be HUGE.
4. The bad news, in Fulton’s opinion, is that the medicine is administered via lumbar puncture, aka big needles to the back. I’ve tried to assure him that he will be asleep during the procedure and not feel anything, but he keeps asking why he even needs this medicine. I’ve told him it will keep him strong and maybe make him stronger, like a Captain America super serum. Fulton is not impressed and keeps insisting he’s strong enough thankyouverymuch so we can save the shots for someone else. So I have to tone down my enthusiasm since, clearly, there’s nothing wrong with him in the first place.
5. If we’re lucky, the boys will get their first dose in a few weeks, then they need subsequent doses at 15 days, 30 days and 60 days, then every four months. The drug is a protein that breaks down over time, so until a better treatment or cure is developed, they’ll continue to need the big needles to the back. The cost for the first few doses? $750,000, with follow-up doses costing $150,000. Some insurance companies are paying, some aren’t, and some are only paying for young children with type one and no one else. The drug manufacturer says it will make sure every person with SMA that wants the drug can get it, but we don’t know if that means they’ll eat the cost for everyone not covered by insurance or what. So we wait and hope for the best. It’s times like this I realize how lucky we are to live where we do and have access to a hospital that is so proactive in administering Spinraza. I know many SMA parents around the country are not as lucky.
6. I’m leading a friend’s book club in a couple of months in order to convince everyone present about the greatness of Flannery O’Connor. I’ve had other people ask me for recommendations on how to approach or “get into” O’Connor’s work, but preparing for the book club finally forced me to sit down and figure out a recommended reading list. I selected the following short stories, to be read in this order:
I also selected some short essays from ‘Conversations with Flannery O’Connor’ that can be read between the stories or afterwards (found on pages 41, 44 and 58). However, I’m already second guessing myself since I think the Conversations book can be hard to find. I might select one of the longer essays from ‘Mystery and Manners’ instead, like ‘Some Aspects Of The Grotesque in Southern Fiction’ on page 36. (Ideally you’d read her complete short story collection and the entire Mystery book, before tackling a novel, but one book club at a time.)
I think these stories ease you into O’Connor’s style, saving the most intense story for last. By also reading her essays and interviews I think you get a better sense of why she writes the way she does from O’Connor herself (spoiler: it is for shock value, but not in the way you think).
7. I got an immersion blender for Christmas and used it for the first time this week and guys, seriously, how did I ever make baked potato soup before I had this thing? I know everyone is on the Instapot bandwagon right now, but I’m ALL about the creamed soups and whipped cream (just not at the same time.)
How was your week? Any major medical breakthroughs you’d like to share? Write them down then link them up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
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