Life Lately
Why Our Baby is Wearing a Helmet
How is February almost over? Kate will be 8 months in a few days, snow is finally melting, and it’s been sunny until 5PM! Margot pointed out that she could hear birds chirping so spring is coming and I cannot wait for more time outside after a freezing, snowy few weeks indoors. Our days are mostly the same so there’s not that much going on, but I guess we’ve had some pretty big updates the last month! So let’s discuss why our baby is wearing a helmet.
Life Lately: What we’re up to and why our baby is wearing a helmet
As you can see in the photo above, Kate got her helmet.
She’s healthy and perfect but her head is a little misshapen (no big deal) and our doctor recommended getting a consult. There wasn’t much of a transition, and other than the way this thing smells after being on her head for 23 hours, it’s been pretty easy. She has fitting appointments every two weeks and should have it for about 3 months. I ordered her sticker from this shop.
Kate’s onesie is Jamie Kay.
Conor and I received our first doses of the COVID vaccine yesterday.
I’m finally feeling like there’s some hope. I mentioned this on instagram, but as caregivers to a child with leukemia, we qualified under 1A.I’ve gotten a few questions about how we got it, but the link sent by our oncology nurse was for us only (she gave us a letter, too), so I’m afraid I can’t help anyone else. This doesn’t change much for us in terms of day-to-day, but the worry behind one of us getting sick and only having one healthy parent to watch the girls overlapping with clinic or an ER trip was always there. This feels like another thing we’re able to do to keep both the girls safe, but of course there’s additional concern for Margot with chemo.
I finally had the oral surgery that I knew was coming for years.
It’s a long, complicated story that I’ll share one of these days but for now, I’ll just tell you that I had a string of very bad luck and had to have the first two of our visible teeth pulled and implants put in. It was better than I anticipated and really best case as far as the procedure could go. I didn’t need a bone graft and was able to get the implants put in same day. If you need an extraction and implant, know that it’s going to be ok. A piece of advice: get pain meds and take them before or immediately after the procedure ends. I was pretty sore when the novocaine wore off, but once the meds kicked in I was fine. A year ago, I would have been a lot more anxious about this but after everything Margot has been through, I was like…they’re just teeth and it is what it is. Grateful for the gift of perspective.
Margot updates
She’s a little pistol and I have done the worst job at writing down all the funny stuff she’s been saying. Here’s her signature move, the “clam dance” which she does on request throughout the day. Lots of singing and dancing. ABCs, twinkle twinkle, Daniel Tiger, too much Peppa, and single ladies. Yes, Beyonce. She’s really into “Jonas Brothers on sponsfy” (spotify) and “the regular Beatles” (here comes the sun and hey Jude are the “regular” Beatles songs. She’s also not a darling and is just a “regular big girl” so there’s that, too. Our days are spent playing with these toys and homemade playdough.
Margot got through the beginning of maintenance and our first 5 day steroid pulse.
Steroids are bitter and very mood-altering, so it was a rough start. After a lot of trial and error and a nightmare trip to the oncology floor at 8PM one night, we finally figured out a way to get her to take her bitter steroids. I went from celebrating to feeling really sad and anxious, and then relieved. Such a rollercoaster. In case this will help anyone, I ordered cherry flavoring syrup and that does the trick. There were a lot of rewards, too (small toys). She did it!
Margot is also very into Duplo right now
so I ordered a few as rewards for taking her meds when we were really struggling. Most of her favorite sets are on sale. She loves this cafe, Minnie Mouse bady party, and this train.
I took this photo on our last frontline clinic day.
In much more exciting and meaningful news, we raised over $100,000 for childhood cancer. At first, I had this big goal of raising 10k. Then I was like should I change it to 20? 50? I did not see this coming. In Feb 2020, I made a few donations to childhood cancer research and reached out to a few women who started organizations to help families going through cancer treatment. Less than 3 months later, my daughter was diagnosed with Leukemia. In early June, I started a fundraiser for our hospital to raise money for research and families going through treatment. Seven months and 1,276 donations later, we had raised over $86,700. We completely funded the emergency fund for families in treatment and are talking about starting a new fund. We’re going to help with some programs for pediatric oncology patients, parking fees etc.
We raised 15k in two weeks
Less than two weeks ago, in an effort to help families outside of Chicago, I decided to start fundraising for Alex’s Lemonade Stand. We raised over $15,000 so far! This is a reminder that there’s so much good out there. To everyone who helped donate or share our story, the biggest and most heartfelt thank you. I did not do this. We did. Thank you.
We’ve been playing a lot of hide and seek.
Margot loves counting to 10 and screaming “here or not here I coooooome!” and Conor is getting very creative with his hiding spots. I’m also really liking how our console looks right now. These baskets have been great for toys.
Our pantry is mostly done!
I bought 20 baskets (a mix of the large and large square) and just ordered custom labels for these label clips. Feels so good to have this extra space. I linked all our storage solutions, lighting, and shared all the details in this post. We also got a new dining room rug and I figured out a budget-friendly solution to make Kate’s room pitch black for naps.
