Radiation + Photos
Since our last update, we’ve settled into a new rhythm here at CHOP.
For Bea, the biggest shift has been around her nausea that started with radiation. The week leading up to her G-tube placement was incredibly tough — lots of vomiting, discomfort, and trial-and-error trying to find what would help. Ultimately, the G-tube surgery felt like the right call, and we’re so relieved to say that, at least for now, her nausea finally feels under control. It’s made such a difference in her comfort and in all of our days.
In very Bea fashion, she’s also fully embraced her G-tube — which she has named “Tubita.” She loves “feeding her,” proudly helping push meds through like it’s her job.
Radiation has also become part of our daily routine. In a twist that continues to make all of her doctors laugh, Bea actually looks forward to it every morning because she loves the “tingly funny feeling” from the propofol. Apparently most kids hate it — but not Bea. It feels very on brand for her.
We even had a little unexpected milestone — during one of her anesthesia sessions, they pulled a very wiggly tooth so it wouldn’t fall out when they placed the breathing tube. The tooth fairy still managed to find her here, of course.
She’s been making some progress with PT as well - building tolerance to sitting independently and moving around in bed. She’s less wobbly with fine motor skills like writing and making crafts — next up, building up the strength and flexibility to stand and eventually walk! She was so deconditioned from over 3 weeks of sedation/intubation and then weeks of bed rest while on 24/7 BIPAP.
Reid has been having her own big moments too. She worked up the courage to crawl, and we are so, so proud of her. She’s getting more confident by the day, and her personality is just captivating — curious, determined, and full of laughter. We’ve been doing weekly sessions with a Teacher of the Visually Impaired (TVI), which have been amazing, and we also had the chance to meet with an incredible ophthalmologist here at CHOP. Her team actually helped develop gene therapy for a different form of LCA, which was pretty surreal and reassuring to be around that level of expertise and forward progress.
On a personal note, I made the decision to step away from my job so I can focus fully on Bea and Reid during this time. It feels like exactly where I need to be.
And back at the homestead, we’re so grateful to our friend Emma who has moved into our house and is taking great care of the animals. Georgie and Penny (and the goats) are enamored with her.
I’m not on Instagram right now, so I’m sharing a bunch of photos here instead — little snapshots of our days.
As always, thank you for being here with us 🤍