Lately I have been able to go days without thinking about the reality that Tori is dying.
She has been so stable, so calm, so content.
So, it was a rude awakening when she started to have difficultly swallowing last night.
The suck and swallow reflex is a “use it or lose it” ability, which is why we almost always have her sucking on a pacifier. We were advised by the SLP at Hershey Medical Center back in February (pre-diagnosis but post-swallow study) to do so in order to help her maintain those abilities as long as possible.
Four months later, she still has both abilities, but her swallow reflex is fading.
We had already started the process of obtaining a “suction machine” for her, but today it became our first priority.
We will use it to help her get rid of saliva and phlegm when she cannot swallow it. This machine will help us prevent her from aspirating anything, which is crucial because aspiration can lead to pneumonia. Pneumonia will likely lead to…
The machine will be delivered on Monday. Until then, we have to listen to her carefully and do our best to help her get rid of excess saliva with the “booger sucker” bulb.
Today was a reminder that she is fragile, that she is dying.
It reminded me to continue to pray diligently and without ceasing for her, because in the busyness of caring for her it is easy to forget to do anything else, including prayer. And I humbly admit that full days have gone by where I have forgotten to say even a short prayer for her because I have been so focused on her needs; I had forgotten that the greatest thing I can do is to pray to the only one who can heal her. Not anymore. Our baby girl still needs a miracle.
Please pray that she will maintain the ability to swallow as long as possible. Please pray that God will choose to restore Tori and make our Victoria victorious through Him. ❤️
Our God is greater
Our God is stronger
God, You are higher than any other
Our God is healer
Awesome in power
Our God, our God
— Chris Tomlin
Even So, Joy 
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