1. First things first! I got word yesterday that both boys were approved by their insurance company to begin receiving Spinraza (the first drug approved by the FDA to treat Spinal Muscular Atrophy)!!!!! Due to who knows what I had not received an update in some time from the Children’s Hospital of Philadelphia and was understandably concerned, especially since the boys’ insurance criteria would have excluded Fulton from receiving treatment and I was afraid of how long the appeal process could take. HOWEVER, the criteria was updated, CHOP worked its magic behind the scenes and hopefully within a few weeks both boys will be scheduled to receive their first doses. I’m curious to know how well this $750,000 miracle drug really works.
2. It was a week of happy insurance news- I was also waiting on the results of an appeal to the insurance company over Fulton’s feeding supplies, which they suddenly decided he didn’t need. Thankfully, they overturned their original decision and we’ve got the green light to continue the tubie life!
3. I rearranged Addie’s fencing schedule so I could attend the last homeschool mom’s social of the school year, and despite showing up empty-handed, I left with gluten-free cupcakes and a bottle of Sangria. I wonder if I would ever make out so well at a PTO meeting? And I might institute summer social from here on out.
4. I’m sending out my June newsletter this weekend! I’m going to share our family’s summer reads, some ways to prepare for the feast of Corpus Christi, plus a sweet Sacred Heart printable. Plus, I like to answer questions from my community. Sign up below, and feel free to shoot some questions my way for the Q&A section, or to suggest something you’d like to see me write about here or there.
5. In a little over a week, BOTH Fulton and Teddy will be going to MDA camp. BOTH. BOYS. I’m sure a good mom would be concerned about her youngest child’s first overnight camp experience, and maybe even decide to let him wait a year if he showed any hesitancy….but I am not that mom. In fact, Tony and I have booked our first overnight trip sans kids in a decade. We’re not going far (just in case we need to get to camp for any reason), but we’re staying ALONE IN A FANCY HOTEL FOR TWO NIGHTS. (Thank you Groupon!) The older kids will have fun with my parents all week so even after Tony and I get home from our trip, we get to be alone in our house!!!!!! (Now you understand why I’m even putting books on a summer reading list for myself.) I am praying Teddy will do well at camp. Fulton is a pro, and I think having a big brother around will be a help for Teddy, but as the date approaches, I am bribing him with all sorts of things just to make sure he “tries very hard to be good and have fun!! Yes, Mommy loves you! That’s why I’m sending you away!!” So far I remember agreeing to let him have a sleepover in my “big” bed when he comes back…for maybe multiple nights?? I’m sure he’ll remind me of everything else in due time.
6. Orphan hosting has come up in a few conversations recently so, just in case anyone was wondering, we will NOT be able to host Bart and Lisa this summer. We tried sending Easter packages to them, but I can’t confirm they arrived. At this point, is does not look like they will be hosted for the summer. We will reevaluate in the fall and see if we can host again at Christmas time, or decide if there is something else we should be doing to help orphans internationally or domestically. I’m sort of bummed about it and it’s hard to discern what our next step should be.
7. Last weekend Tony and I (who are high school sweethearts) had dinner with a close group of our high school friends. It used to be a yearly occurrence but the last couple years we couldn’t’ make it work for various reasons. Although a few friends cancelled, we had a great time catching up with everyone as usual. We’re a fairly eclectic group spread out up and down the East Coast. We’re Catholic, atheist, Unitarian, various strains of Protestantism and an Episcopal priest too. Our political and social beliefs span the same expanse. However, we can all come together and talk and laugh about any, and everything. Based on what one sees online, you’d think it impossible for people with opposing views to even sit next to one another, but not only did we do that, we found much common ground and genuinely enjoyed one another’s company. Don’t get me wrong, I love social media. It’s how I keep in touch with this crew the remaining 364 days of the year, but for real conversation and understanding, you can’t beat personal conversation and connection. If before typing a comment we all stopped and considered whether or not we would utter these words to a person sitting across from us I think many would type a lot less. I love my friends, even when I vehemently disagree with them and I know that if I hope to help along their conversion, it will not be through harsh words sent through a monitor but through the trust earned by years of listening and friendship. And most importantly, even if I don’t convert them, I still love them! I don’t have to “win”. We can be friends and disagree. It seems a novel idea these days. I guess I’m glad to be a part of something more old-fashioned.
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!
Insurance issues: UGH. I’d love to work for an insurance company, reviewing speech therapy claims because there are some real winners out there who don’t review very well.
GOOD FOR YOU & Tony for getting away for a couple of nights! Hoping that Teddy has a fantastic experience and y’all won’t be needed so you can relax and enjoy each other.
Summer reading, couple time, and sending kids away. Sounds very familiar to me, but we’re at a very different stage of life. Some things change over time, and some – like trying to connect with the hubs and let go of the kids – don’t really, do they? Love seeing the “hey – me, too!” moments in the link-ups. Thanks again for continuing to host the link-up. Best of luck with the new meds!! Praying for you all.
Such good news! We have been praying about the Spinraza. (As an aside, I think you would be GREAT at naming medicines… maybe that should be a future SQT!)
I used to volunteer as one of the doctors at diabetes camp- similar to MDA camp, this was the only time most of the campers and their parents ever had an opportunity like it- and it was always a blast. I am sure it will be worth whatever you had to promise Teddy. =) Enjoy
HAppy to hear your insurance news and that you are getting away!! Hope you have a great time!!
You buried the lede: #7 sounds awesome! I was recently explaining my rules for charitable comment-section debates to my boyfriend. Something about the distance of a screen and the Internet triggers everyone’s Angry Eyes.