December 15, 2016 (posted later)

I am trying to figure out how to word this carefully. My dad had more testing done today, which yielded more bad news. Please bear in mind that - even though we know he has a motor neuron disease - this is still quite a lengthy process of confirming it to be ALS. This is why we only know things in pieces. We are learning as we go. I hope that makes sense.

Today's test was a video swallowing test. This means that they squished dad into a space between plates so that the specialist could take images of how his body works during the swallowing process. They tried out various liquids at various thicknesses. The results, while we expected them to be 'off', were better described as devastating to us.

They found that he already has significant impairment/swallowing difficulties. Instead of waiting for worse to come, he is already being put on a pureed foods restriction. He can have liquids, but they need to be thickened. If this does not help him to stop coughing, they are going to have to put him on a feeding tube. :'( :'( :'( They believe that decreased airway protection is mostly likely the epiglottis failing to close properly. Again, this goes back to nerve death. :'(

The problem is that food (even pureed, but we hope and pray not) can go down the 'wrong pipe' so-to-speak. This would put it into his lungs. That wouldn't just be bad, it could be catastrophic. They said that pneumonia for someone with ALS can be fatal. We absolutely MUST avoid pneumonia!

We have all noticed that my dad's tongue seems to get heavy in his mouth. He begins to slur his words. His tongue also ripples or 'ticks' on its own accord when he sticks it out. This is one more characteristic which makes ALS likely. He is having enough trouble that they want him to see a speech therapist. Going out to the hospital to see one would be another exhausting endeavour and, frankly, too hard on him. We are praying that they can find someone to come to the house to work with him.

Anyway, that is the gist of today's news. My dad's rapid decline continues. :'( It is going farther, faster than we ever imagined. Mom is an absolute rock, getting him to as many appointments as they can give her as quickly as possible. The official diagnosis is important because it will inform the team of doctors how best to move forward with his care. For ALS and any other MND, quality of life is the big focus.

We are all in a completely new and foreign phase of life, with my parents (and especially dad) at the epicenter. We are learning about the next steps, even while my mom is focusing on one day at a time.
My dad is going to need so much care. We are all here for them as much as possible, of course.

Please keep them covered in your prayers as often as possible. We are asking and praying for God's mercy and strength. We never thought at Thanksgiving that we would already be discussing feeding tubes and end of life care. God help us. :'( He is good in all phases of Life. May the Lord be praised.

"But it is good for me to draw near to God: I have put my trust in the Lord God, 

that I may declare all thy works."  Psalm 73:28