Tori was admitted to the hospital almost exactly ten months ago for a feeding tube pre-diagnosis. 

That hospital experience was incredibly stressful because we felt like we were in the middle of life or death, waiting for a definitive diagnosis and corresponding treatment – or lack thereof in our case. The time passed so slowly and we never knew how long we would be there.

This stay is much different, a relief in many ways. 

Caring for Tori at home is challenging and exhausting, sleep deprivation aside. Being in the PIMCU means there are plenty of people to care for her, including a respiratory therapist every two hours. We know that she is in the best possible hands.

And yet, despite the relief, we are yet again reminded of her fragility. Of her terminal diagnosis. 

The first night here they asked us about life-saving measures and we had to make decisions about whether to resuscitate or choose DNR given her prognosis should that situation arise. 

Parents should never have to make these decisions for their children.

  
I want to cuddle with her like we do every day at home, but she is so attached to monitors that I went nearly two days without holding her. That was remedied today ❤️

I am sleeping about eight feet away from her, which I haven’t done since diagnosis for a variety of reasons. It feels so far.

And yet, we are still filled with hope and gratitude each step of the way. 

We are so blessed to have an amazing children’s hospital right in our backyard. She truly is in great hands. We have been able to educate so many people about Krabbe during this stay, and that alone is priceless.

We have been so touched by the nurses who have cared for Tori, as well as other staff members (the man who brings the meals has become one of my favorites because of his kind heart and gentle spirit and for how he takes care of me).

And, we are so thankful to still have Tori in our lives. We know time is short, and because of this we treasure each and every moment with her.

Ten months isn’t a long time, but so much has changed and we are thankful for our new perspectives.