Kyrie’s team at school is amazing, and they take very good care of her.
They also keep me updated.
This morning I got this picture, warning me that she had some peripheral color changes, which indicate that her body is conserving oxygen to be sure it gets delivered to her heart and brain (and so pulling it from her arms and legs).
The scary times, though, are when she has a central event – which means her heart and brain are struggling for oxygen, too. Sometimes she just really struggles and it’s precarious and wears her out, but often this is when she codes and has to be resuscitated. It’s always scary, because your baby isn’t supposed to be purple, and central events we do report to Pulmonologist.
We had a brilliant and comparatively easy summer, even though she missed out on things like swimming and splashpad fountains because of aspiration. She sleeps too much, and we still fight for every ounce she gains, but she blossomed from a baby into a toddler and it has been delightful (except for the toddler part!).
But the last three weeks have been really hard, and she is really struggling, and the pattern suggests that she is indeed outgrowing her airway again.
It makes me cry.
She is also just weeping – not crying or upset, but tears pouring from her eyes – when she tries to eat, because her esophagus is pushing on her trachea that is already too small for her now, closing it off as she tries to swallow. It makes breathing during meal times even more difficult than it has always been, which is sad because she so desperately needs to eat and so very much wants to eat.
Mostly, though, she is happy but worn out, now seventeen months into her battle for air.
But a good school and good team and good communication means this little one just barely avoided an ambulance ride today.
We so appreciate your prayers as this little one gives light to all around her, and as so many try to help her and give her quality of life as much as possible.
We do also invite you to her next fundraiser, so we can get more equipment for her to leave at school and prepare for the next round of surgeries. It will be great fun, and everyone is so excited! Kyrie loves to sing, so when the Heritage Theater asked to help for an event, this seemed the perfect thing! Come sing with us!