{SQT} School, Spinraza and Some Gift Ideas
Feels like it’s been awhile; how about some old school takes?
1. On Sunday, November 19th we celebrated my mom’s 65th birthday and her retirement from a company she’s worked at for 41 years. She’d planned a big party, with tons of food, and friends and family I hadn’t seen in years. Best comment was by the long time family friend who told me repeatedly, “When you were younger I never expected you to turn out like this! You were just the last person I expected to be Suzy homemaker with all these kids! I was just saying this very thing to your grandmother the other day. I’m just still so surprised!” Uh, okay. Thank you…I think??
There were speeches, songs, a video, tons of hugs, and lots of photos (which I’ve seen but not gotten copies of yet.) Any other year, we could have stayed until the end of the party and stayed through the week until Thanksgiving, but of course this is the year we have kids in school so we had to cut out early to make the trip back to Jersey. Still, I’m glad we at least live close enough to do the back and forth.
2. School is going well most days. For Addie, everyday is fine. (YAY!) I still enjoy everything I’m doing with Byron and Edie, and I feel like we’re all gaining such a better understanding of the material because I’m actually talking to them about stuff for continuous minutes, rather than trying to do something, but stopping mid-sentence to help someone who’s screaming, or being too exhausted from trying to keep my s#@t together for 55+ minutes of continuous phonics. Teddy still enjoys school especially buying lunch, getting all green marks on his ‘Behavior Management Chart’, and writing his name and date on every page of his homework. Fulton enjoys much of school (Spanish class and his reading teacher especially), we resolved some of the worst bus issues, and he has a wonderful team of nurses. The pros still outweigh the cons, the biggest con still being the time Fulton rides the bus each day (minimum 90 minutes each way) plus we now know he sits an additional 30 minutes (in the morning and afternoon) waiting to unload and load. I’m no longer convinced this school is that much better than the alternatives to justify all that sitting around. I believe we are committed to seeing the year through, but I’d like to get back at least two of those hours Fulton wastes everyday somehow.
3. The boys finished the loading dose period for Spinraza in October and in the month since then we’ve seen the biggest gains in their strength. For awhile, I wasn’t sure if I was imagining things or if they were actually able to do more, but now I know for certain that they are stronger, and more importantly, they recognize they are stronger and are continually trying to do more or their own and at therapy. Highlights include Teddy now holding his arms up for a prolonged periods of time while dabbing, rather than him throwing them up by using momentum and having them fall down, and Fulton rolling on his own from side to side for the first time in probably years. We’ll have a follow-up soon to monitor their progress and if all looks good, their insurance will hopefully cover the maintenance doses which are given every four months.
4. Everyone is sharing gift guides. I didn’t think I had anything significant to add except a couple footnotes. The first being Aliexpress. Obviously, buy small, local, handmade, Catholic when you’re able, but if you know you’re going to purchase some mass produced Chinese goods for Christmas, consider buying direct from the factory. There are some caveats. You need to order SOON as it can take up to 20 days to arrive (though shipping is often free), you can get the exact same item but probably not with the name brand printed anywhere on it, and returns can be tricky. But, if you’re on a tight budget and your kids won’t notice if the word Lego is missing from the package, you can do pretty well. I also like a lot of their dresses. I always check the reviews of the product and the shop, as well as read all their fine print (this is especially important for sizing clothes.) We’ve done really well with minifigures. They’re identical to Lego minifigures just no Lego markings. Check out a few items to see what I mean:
Lego Ninjago style minifigures
46 piece magnetic building set
Below the knee, 3/4 length sleeve, blue velvet holiday dress WITH POCKETS for $28!!!
Seriously, who else understands the struggle that is finding nice, modest special occasion dresses for their tween and teen daughters?
5. Second, I’m planning to do more homemade gifts this year, specifically homemade liquor and some fancy snack food. I’m saving it all on Pinterest if you need ideas. I’m saving most ideas to either the ‘Simple Gifts for Kids to Make’ board, or the ‘Recipes: Adult Beverages’ board. I’m also going to review all my craft boards just so I don’t forget any potential good ideas- wood burning anyone??? The trick is to create gifts that people want and don’t scream, “I don’t have tons of money so I tried to make you something nice but this is how it turned out! Sorry!”
6. Third, Groupons make great gifts. I’ve gotten Tony concert tickets, we’ve visited a distillery, and last year my sister got our family admission to a museum. I love experience presents; no wrapping or storage needed, and they’re easy to send to out of town loved ones! Plus, I find that exploring Groupon has helped me discover a lot of local treasures I knew nothing about previously. Like the awesome 1920’s hotel Tony and I stayed at this summer. Thankfully, we’ve never had any trouble with either Groupon or the establishments we’ve visited. It’s definitely something to consider if you don’t want one more thing cluttering your home or you’re trying to find a unique gift for someone who has everything.
7. I’ve also decided to go mostly offline for Advent, including blogging. That means this will be the last Quick Takes for a few weeks. (Also, no newsletter this month.) Things will be quiet around here for a bit, but hopefully I’ll come back with lots to share and some renewed enthusiasm for blogging. I will still be writing this month, just hopefully on my book- the process of which feels something like slowly pulling a band aid off a hairy arm.
I hope all my readers enjoy a peaceful Advent and Merry Christmas! I’ll catch up with y’all soon! Until then, write down your latest and greatest, 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!
Wow, that is so awesome that your boys have been gaining strength! That must be incredible to witness as a parent. I hope you guys are able to figure out a good routine with the school situation-Fulton must be so patient, enduring all of that time sitting around doing nothing!
So happy the treatments are helping! And I am also looking forward to fasting a bit from my screens this advent! Hope your family has a restful advent and merry Christmas!
Ahhh I’m so glad the spinraza is working!!
The kids are all doing handmade gifts this year and they’re SO excited. They’ve been collecting acorn caps and making little woodland peg dolls (I’m doing the wood burning after they pencil on the designs, though, because I don’t trust them yet…), and making lots of random finger-knit & woven creations. It’s still mostly trash, but at least it’s trash that was made with love and using things we already own ?
You put in a lot of effort. I wish to show thanks to you just for bailing me out of this particular trouble.As a result of checking through the net and meeting techniques that were not productive, I thought my life was done.