We’ve been home for about three weeks now, and I think we’re all finally starting to settle back into home life in a way that feels good. 

At the same time, Camila is still not well. 

She recently had her third infusion, this time outpatient at a pediatric infusion center. About a week before her infusion, we started to see her symptoms return, what are called breakthrough symptoms, meaning the medication wasn't lasting the full time between treatments and her symptoms came back before the next dose. While we have started to notice some symptom improvement again post-infusion, her dysmotility continues to be a big part of our day-to-day reality. 

The current plan is to check her labs about four weeks after this last infusion. That will help guide next steps, specifically whether she needs a higher dose or more frequent infusions to better control the inflammation. This piece is really important for protecting the health of her intestines and her ability to properly absorb nutrition, especially since she experienced more weight loss during this most recent period of breakthrough symptoms. 

Because of all of this, she requires essentially around-the-clock care. A lot of her day is spent reclined, just trying to stay as comfortable as possible. And then there are small pockets of time where she feels a bit better, when we can take her outside or let her just be a kid in whatever way she can that day.

We’re learning how to live in this in-between space. Grateful to be home, while still navigating a level of medical complexity that doesn’t really let up. 

One thing we’re really excited about in the coming weeks is that Camila will be trialing a power wheelchair. This kind of mobility could give her more access to play and more opportunities for peer-to-peer interaction, helping her engage with other kids and her environment more independently. On days when her body isn’t tolerating much, it could open up her world in a meaningful way while still supporting her comfort and safety. We’re really hopeful about what this could mean for her.

We also want to say how incredibly grateful we are for the meals that have been provided. Having that piece taken off our plate has made a real difference for our family during this time. 

Thank you for continuing to check in, support us, and hold space for our family in this season. It truly means more than we can say.

With love,
The Weilnhammer Family