{SQT} A New Drug, Another Hug, And Record Love

Happy Spinal Muscular Atrophy Awareness Month! Last Friday the FDA approved a new drug for the treatment of SMA. This is the THIRD drug approved for treating SMA. I was talking with our neuromuscular doctor from the Children’s Hospital of Philadelphia about whether or not risdiplam (brand name Evrysdi) is a good fit for Fulton and Teddy and he mentioned giving Tony and I time to discuss our options. I had to laugh. OPTIONS- plural! Ten year ago there was nothing, now we were discussing one of several options to treat our sons. The drug they currently receive (Spinraza) is given via lumbar puncture into their spinal fluid whereas the new drug is a once daily pill. Both medicines work in a similar way, but if we switch to the oral medicine, the boys won’t experience the side effects they’ve had from the lumbar punctures (which have gotten worse for Fulton). Depending on insurance approvals, we hope to switch them over in September. Fingers crossed! It took eight months from FDA approval of Spinraza to finally getting insurance approval and their first dose (which was three years ago this month). We have no reason to believe it will take that long this time, but who knows?

Friday was also exciting because we got hardwood floors laid in the hallway and Fulton and Teddy’s bedroom. We tore out the orange shag carpeting shortly after closing before realizing we couldn’t go ahead with the floor right away as originally planned, so we’ve been making do with the subfloor for over a year. No sooner had we saved up to do the floors when COVID hit and inviting strangers into our house for the day didn’t seem like such a good idea. But now it’s done and it only took eight hours of noise on a rainy day to complete! At least no one could hear my cries of frustration over the air compressor.

Saturday morning Addie and several other homeschool grads from our parish were recognized. It wasn’t the large homeschool graduation I’d originally envisioned, but it wound up being better than I expected. Our parish priest gave a commencement address during his homily, handed out diplomas after Mass, and we ever got some pictures. It was nice to mark the occasion with families and graduates we’ve known since we moved to New Jersey fifteen years ago. We’ve given up hope on having a large party any time soon, but we had Tony’s parents with us that day, and Addie got an ice cream cake so I think she knows how proud we all are of her.

I’ve gotten questions from several families recently who want to homeschool, but both parents work full-time. It’s a predicament I’ve never personally found myself in, so I’m trying to find families who’ve successfully homeschooled while both mom and dad held down full-time jobs (work from home jobs count). If you’re willing to answer a few questions for an upcoming post, or know someone who might, please email me! Thanks in advance!

After months in lockdown, we were finally able to visit with my grandmother this week. She’s been unable to have visitors to her nursing home in Lancaster, PA for months, but thankfully, she was able to leave to stay with family at her vacation condo in Ocean City. We travelled down to see her for the first time in person since, I think, Christmas?? It was great to visit with her and share a hug.

Only slightly less exciting that seeing my grandmother and the new SMA drug was scoring Michael Jackson’s original Thriller record and Prince’s Purple Rain record for $1 a piece at my local Goodwill. I also snagged the Grease and Rocky III soundtracks on vinyl for the same low price. I left feeling like I robbed a bank. What a thrill!

How was your week? Write it down then link it 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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  1. I remember when you first wrote about Spinraza after it became available, and now they keep making more advances! That’s so exciting.

    Also, I’m sure it was a lovely graduation. Never underestimate the power of ice cream cake.

  2. Hey Kelly,
    Wow, it’s been awhile. Can’t believe how big the kids are getting. I homeschool with both of us working, and would be happy to answer questions. Yay for more treatment options, can’t believe it’s already been 3 years since the first one came out!

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