One beautiful girl
Before the photo-shoot, Nora was worried about having to wear her mask for pictures, which breaks our hearts because it means she's self conscious about her mask. At the same time though, she was very worried we would take her mask off for the pictures.
We are very happy we got these pictures taken when we did though. A short time later, due to having her mask on full-time now, Nora developed a pressure sore on the bridge of her nose. Previously, we had managed to prevent these sores, by switching to a different style mask from time-to-time. Nora had outgrown that other mask. Since then, she has worn the Respironics WISP mask exclusively for over a year. The constant pressure on the same spot took it's toll. We knew this was coming so we had been asking our home health company for a larger replacement - for months!! In the meantime, we've had to pad the area with a bandage while it heals. Finding the right bandage took tons of trial and error. Nora knew the fit she liked and this was different, so she didn't care for it at all. she would say "my mask doesn't ....feel ...right" and get very upset (which is now absolutely terrifying). It took a few weeks but she got used to it, and it's been slowly healing. Ultimately, we need to get Nora on the nasal prong type mask, which we now have. It's such a huge change for her, and trusting something completely different is extremely hard. Nora trusts her very life to her mask - so we've been very careful and not push her to accept it. We learned that lesson the hard way.
The first time we attempted to fit it on Nora, she got upset and something happened that will haunted Jaime and I for the rest of our lives. I still am not ready to talk about what happened, but it's getting more and more difficult to step around it. Which is why the posts have slowed down. I feel horrible that because of my fear, I'm failing to do what I set out to do ... tell Nora's story.