As we continue working through some complex medical decisions, we wanted to share where Camila is right now.

The strongest suspicion, supported by Camila’s persistent symptoms, is that she is experiencing a small bowel inflammatory flare consistent with Crohn’s disease, in addition to her known ulcerative colitis flare. This helps explain why some of her symptoms haven’t fully resolved despite treatment so far. 

As such, we’ve had to return to gut rest, meaning no enteral nutrition for now. The good news is that TPN (IV nutrition) has been supporting her well. Camila is gaining weight, has more energy, and is looking stronger overall, which is exactly what we want to see while her body heals. Through the pain she still experiences, Camila seems much happier and our days are filled with more smiles and laughter.

It’s becoming clearer that Camila is having a partial or steroid-dependent response. While steroids have helped somewhat, based on her repeat scope yesterday, they haven’t been enough to fully control her inflammation, particularly in the small bowel. Given this, the IBD team is recommending we escalate treatment to biologic therapy. 

Biologics are medications that target specific parts of the immune system driving inflammation. They are commonly used when steroid response is incomplete, when Crohn’s disease is involved, or when inflammation affects the small intestine. The goal is deeper, longer-term inflammation control and importantly, to allow us to wean Camila off steroids, which are not safe long-term. 

The typical plan involves an initial series of infusions (called induction), followed by ongoing maintenance infusions every several weeks. If effective, biologics are usually continued for years to keep disease under control. We plan to start biologic treatment inpatient, as soon as insurance approval is finalized. Because Camila has shown some response to steroids, we’re hopeful that after her first infusion we may begin to see early signs of improvement, though true inflammation control can take weeks. 

We also continue to strongly suspect dysmotility, possibly secondary to her inflammatory flare. Given the severity of her symptoms, we’re making sure we initiate care with a motility specialist so this piece is not overlooked. 

Over the coming days, there will be a lot of early discussion around discharge planning. Possible paths include going home on full TPN until her gut is ready, combination of TPN and enteral feeds, or returning to full enteral nutrition. A big part of this decision-making comes from how Camila responds as feeds are reintroduced and also from being honest with ourselves about how much additional caregiving Frankie and I can reasonably take on without fully compromising our own wellbeing.
 
Our priority has always been being the best caregivers and parents we can be for Camila. That means being acutely aware of our capacity limits. In some cases, that may mean choosing a longer inpatient stay to give Camila the time and support she needs to tolerate nutrition safely.
 
None of the options in front of us are easy. Every path comes with trade-offs, and we know some decisions may look confusing from the outside. But one thing is constant. We continue to advocate fiercely for Camila, even when that means choosing the best option for our family out of a set of very undesirable choices.
 
For now, our hope is to begin biologic treatment this week so we can start moving toward steroid weaning and longer-term healing.
 
We miss our home.
We miss our routines.
We miss home-cooked meals.
We miss our community.
We miss visits from family and friends.
 
And through all of this, we’re doing our best to bring Camila joy, as she so effortlessly brings it to us.
 
Thank you for continuing to support our family.

With love,
The Weilnhammer Family