Soraya’s Recent Health Changes

While the past week or so has been filled with some incredible events… we have also been reeling in bigger changes in Soraya’s health.

These changes have been especially evident at the three appointments she had this week: pulmonology, genetics, and palliative care.

Pulmonology – We learned that Soraya is now becoming increasingly short of breath and also retaining carbon dioxide while talking. This a new and frankly worrisome finding, as it shows her physiological reserve is dwindling.

Bottom line: it’s hard for her to breathe effectively and talk. She needs to take sips (a small mouthpiece connected to her vent that is “sipped” for additional breathing support) while she is talking, on top of the 12-15 hours of ventilator time she already does per day.

Genetics – Soraya opened the appointment by saying, “I am afraid of dying sooner”… and we ended the appointment with, “It seems that things are getting worse much faster than it has before.”

Palliative care – We have not been able to control her pain. We did another increase to her pain patch.

Despite these challenges, all Soraya wanted was to go to her choir concert tonight. Even though she doesn’t attend school in person anymore, she occasionally attends choir virtually and was really looking forward to this performance.

She went to a rehearsal yesterday... then Safi sent me this text when I was at work and shared that Soraya decided it’s best for her not to go.

So tonight, instead of seeing her on stage one last time, I gathered some of our amazing babysitter tribe. We are having a little celebration for Soraya’s advocacy for herself with Crumbl cookies and rest.

These losses are extremely painful despite being anticipated. The sting of the losses was not dulled by my knowledge of knowing we are on this path. 

We have shared with Yasmeen and Leena and ALL of us have had howling, breath-stealing cries randomly throughout the week.

As I’ve said before, we are not ready and we have no choice. 💔